Autism Blogs Directory

The Help group and Music for Autism

2012-02-13T20:07:00.000-06:00

The Help Group & Music for Autism present their sixth interactive concert for individuals with autism and their families. Music for Autism offers professionally performed, enriching musical experiences in an environment where individual differences are celebrated. The one-hour interactive concert includes three segments - “concert time”, “conducting time” and “percussion time” - where concertgoers are invited to join the experience with their movement and provided instruments.

The show at 1pm on Sunday, March18 will feature WindSync. A young, fresh and energetic ensemble, WindSync is thrilling audiences with their unique approach to classical music. Critics and audiences alive rave about performances that expand the woodwind quintet repertoire with several world premiere pieces that were written or arranged especially for WindSync.

The performance is free and will take place at The Help Group Culver City Campus, 4160 Grand View Blvd, Los Angeles, CA 90066.

Reservations are required and can be made at www.musicforautism.org; or by calling 877-863-7473 ext. 1

How to learn social skills with Asperger's syndrome

2012-02-01T18:46:00.001-06:00

Guest Post

Hi everyone! I'm Dan, and I'm the author of http://www.improveyoursocialskills.com.I was diagnosed with Asperger's ten years ago, and I've spent the years sincemy diagnosis studying social skills so I can overcome the challenges ofAsperger's.

I wrote this blog post to share the most important rule Ilearned for learning social skills with Asperger's syndrome. I've addressedthis post to readers who have Asperger's themselves, but these tips can just aseasily be used to help a loved one who has Asperger's.

The most important rule I've discovered is this: Learnsocial skills by understanding the reasons behind them, not through rotememorization.

The Problem With RoteMemorization

The most natural way that people with Asperger's learnsocial skills is through rote memorization. We learn a specific response thatworks for a specific situation, and so when that situation occurs, we deploythat response.

For instance, we learn through trial and error that ifsomeone tells us their name, we should tell them our name in return or theywill be upset. Easy enough.

But if the situation changes, our memorized response doesn'thelp us. Let's say Bob introduces Joe to us. Do we tell Joe our name, or isthat Bob's job? We memorized what to do in one specific situation, but when thesituation changes we are out of luck.

Of course, rote memorization is better than nothing. Butthere's a better way.

Learning To Understand

Instead of memorizing specific responses to specificsituations, learn to understand the reasons behind a social situation.Train yourself to think through what other people expect from a situation, andponder how you can help meet the expectations of others and make theinteraction more positive.

When you learn to think through the reasons behind a socialsituation, you can use that knowledge to derive the correct response to thesituation--even if you have no rote response memorized. All you need to do isponder your understanding of what people expect from a situation, and thenrespond in a way that matches their expectations.

For instance, let’s dig deeper into introductions. Whatpositive results do people expect from an introduction?

The obvious result is that an introduction allows people toshare the data of what everyone's names are, but there's more than that. Someother desired results of an introduction might be:

-The sharing of relevant information about the people beingintroduced (for instance "Hi, I'm Dan, and I'm a friend of Bob’s)

- Giving everyone the chance to speak so they feel included.

-Creating a socially acceptable way to start a conversationfrom scratch

-Allows people to get a feel for each other before the conversationbegins in earnest.

When we know the results that people expect from anintroduction, we can use this knowledge to guide our actions.

For instance, if we see that one desired result of anintroduction is to give everyone the chance to speak, we know that we shouldn'tstart telling a long story until everyone has been introduced.

If we see that introductions create a socially acceptableway to start a conversation, we know that if someone introduces themselves tous, they are trying to start a conversation and we should respondappropriately.

This concept applies to all situation situations, not justintroductions. When we learn the desired results that people expect from asocial situation, we can choose responses that help achieve the desired resultsfor that situation. All you need to do is take a moment to think throughthe reasons behind a situation, and you can deduce what you should be doing inthat situation.

By learning to understand the reasons behind a situation, wecan free ourselves from the massive list of rote responses, and have a muchgreater ability to handle whatever social situation we find ourselves in. Itreally is that simple, and it really is that powerful.

Practical Applications

I'll close with a few pieces of advice for how to apply thisrule to your own lives.

First, please realize that you will not be able tocreate a comprehensive list of every desired result that people expect from aninteraction, especially at first. But you should be able to think up at least afew, and you can ask friends and family to help you uncover more. You will alsonaturally discover more desired results of a given social situation simply by observing peoplein that social situation. So as time goes by, your understanding of socialsituations will grow more and more.

Second, if you are still having trouble understandingthis idea, there is a metaphor that might help. Picture a classroom. Thedesired result of the classroom is for students to learn. A teacher has twooptions for trying to achieve this result. He can either make a lengthy list ofrules--no talking in class, no chewing gum, raise your hand if you have aquestion, etc. Or, he can teach the students to think "If I do thisaction, will it disrupt the other students from learning?"

The lengthy list of rules is similar to the rotememorization. The problem with it is that it's impossible to make a rule thatforbids every negative thing a student might do, and it's also no fun forstudents to have to memorize a huge list. The better option is for students tounderstand that their goal is to be non-disruptive, so they can think forthemselves, and realize when a potential action would disrupt the classroom.

Third, if you need another example of understandingthe reasons behind an interaction, take a look at my guide on how to makeconversation. I explain the reasons behind conversation, and show you howyou can use those reasons to guide your responses.

Finally, remember that like everything, this is askill that grows with practice. If you learn to understand the reasons, youwill not magically become a social superstar. It will take time, practice, andhard work for you to learn social skills in this way.

But it will take considerably more time, practice and hardwork if you learn through rote memorization, and you will have much lesssuccess overall. When you learn to understand the reasons behind socialsituations and train yourself to react accordingly, you will dramaticallymultiply the benefit you receive from studying social skills. And as youcontinue to study social skills and grow in your understanding of socialsituations, you will find yourself increasingly able to thrive in socialsituations and build the deep, intimate relationships that you deserve.

That's not magic. But it's incredibly powerful, and it'ssomething you can start today. Good luck!

A post from Autism Daddy...

2012-01-16T17:56:00.000-06:00

www.autism-daddy.blogspot.com
"A Letter To The Dads That Left Because Of Autism & The Ones That Are Thinking Of Leaving... (from a dad who stayed)"

I hear alot on my Facebook Page from women who say that their husbands bailed out on their families/ marriages due to the stresses of autism in their lives. And every day I see another new Facebook page from single autism moms like "Single Mothers who have Children with Autism" and "Tales Of A Single Mom Raising A Child With Autism"

The whole thing, the idea of leaving your family due to a disability sounds so completely bizarre to me that I thought about writing a letter to these dads... And here it is...

A letter to the autism dads that left and to the ones who are thinking about leaving....

________________________________

Dear Dads,

Let's get something out of the way right out of the gate. Let's admit it. Let's call a spade a spade You were a jerk already, before the autism, right? You probably would've left for some other reason. It was already in your DNA to be a loser, right?

Let's be honest, if you didn't have a kid with autism I still don't think you'd be winning any father/husband of the year awards...

If you leave your wife and family cuz of autism then I'm betting you probably never would've been satisfied with your life /marriage and probably would've bailed at some point no matter what the circumstances or stayed and been miserable and/or a jerk. Because if you honestly left your wife and family solely because of the hardships of life with this condition than you are not a man. You are a weasel.

I mean if your kid had cancer would you have left? Would you have left your wife to deal with all of the stress alone then? Or what about some other disease/ disorder? Or what about cerebral palsy or down syndrome? Would those have sent you running for the hills? Or what was it about autism that scared you off so much?

I mean I get it fellas, you may not be able to have the "typical" family life you were always expecting. You may not be able to take your kid to the ballgame, or play catch, or a million other things, but "WAAAA!" stop crying and get over it... And do something to be happy! I mean what else are you gonna do? Try again for a typical family with another woman? What if the autism is in your genetics? You gonna keep trying to you get it right?

Now if you already left and divorced your wife. It's not too late to step up and be a man and be an integral part of your ASD kid's life.

Learn more about him. Learn what makes him tick. Take him more often and give your ex-wife a break more often. Take your kids for an extra weekend here, a week off from school there. Give your ex-wife a small chunk of the peace and quiet that you get all the time since you bailed out.

But when you do have the kids please abide by the rules your ex-wife has set up. You bailed out and left her in charge. So now you have to accept the decisions / choices that she's made. If she's got the kids on the GFCF diet, stick to it even if you don't agree with it. If she's got rules about how much tv they can watch abide by it. You gave up your right to help make those decisions. The least you can do is follow the rules / protocols she's set up. RESPECT HER CHOICES.

And also try to be a unified front both in your parenting of your kids and out in the world. What I mean by this is even though you're divorced doesn't mean you shouldn't show up to your kid's IEP meetings or open school nights or other important events like this. Even if you're out of touch on the details just showing up as a sign of support and solidarity goes a long way!!

So if you were a loser who bailed on your wife / family because of autism, it's not too late for you to step up and be a real man! You can even start today! Instead of going somewhere to watch the NFL Playoff games today call your ex-wife and grab your kids for the day and give her a break. You can always DVR the games and watch them tonight. I know you don't want me to let all te women in on our little secret... But all us men know that if you remove the commercials, timeouts and halftime the average football game can be over in about 52 minutes.... :-) So now you've got no excuse not to start today!

And to the dads of newly diagnosed kids with autism that are thinking about leaving...

Stay.

You don't need to reinvent yourself and become this super amazing autism dad. That's not what your spouse is looking for. Just be a wee bit better than the husband / father you were before autism hit.

If you were the kinda husband / father that went out 3x a week with the fellas, poker one night, golf on Saturday, football on Sunday, then that's the precedent your family dynamic has set. So when autism enters your household don't think your wife is looking for you to drop everything, just drop one of them, maybe two on stressful weeks.

And then pretty much do all the things I suggested to the divorced dads above. Be more involved, be a unified front, respect her decisions, etc, etc.

But if you are gonna stay in the marriage you have to be there. Be present. Don't stay if you're gonna stay and be miserable and distant and drag your wife down with you.

I would leave if I felt i was dragging my wife down. But first I'd try to make myself better, thru drugs or running or something. Read this other post of mine with more tips and pointers on how to be happy in your marriage when autism comes along.

And to both the dads who bailed because of autism and the dads who are thinking about leaving because of autism... the fact that you are reading this is a big step. It's not too late for you to make things right and to step up a be a real man, a true father, a good husband or ex-husband. Just take the first step. And if you ever want to chat about things or need a male shoulder to masculinely cry on :-) please join my Facebook page or email me at autismdaddy.fb@gmail.com

Sincerely yours,

Autism Daddy

When the Disability Community Works

2012-01-16T09:53:00.002-06:00

We're used to outrage in this community, of hearing or reading a story and running with it. Sometimes, it's to attack and condemn other parents or individuals, but sometimes, when the disability community works well, it's to gather together to bring about change, to fight for a family.

This time, it's to protest a doctor at CHOP who told a family he would not recommend a transplant for their young daughter because of her cognitive disability.

The mother, Chrissy, writes of this horrifying conversation at wolfhirshhorn.org in a post titled "Brick Walls." We can all imagine ourselves in this situation, but even this imagining cannot come close to the sheer terror, rage, and grief that Chrissy and her husband must have felt.

In a voice that mimics hers, I snort, “Well, what happens if you die tomorrow? Who will take care of your children? Your responsibilities at work?” She breathes in and her eyes widens. “Right!” I throw at her. “Neither of us can predict the future and we shouldn’t try. But if Amelia does not have this transplant she has no future!”
The doctor interrupts. He puts his hands up and tries to take a stern voice with me. “These medications she has to take after the transplant, they are very dangerous. They can cause seizures. We have to get the dose exact. They may cause brain damage.”
“DO OTHER CHIILDREN WHO HAVE A TRANSPLANT TAKE THIS MEDICATION?”
“Yes, but it is different for her. She is already brain damaged and mentally retarded.”
He pauses as if he is choosing his words carefully. “I have been warned about you. About how involved you and your famliy are with Amelia.”

The community has rallied around this family, inundatingCHOP's facebook wall with comments decrying this doctor's actions and demanding action. A petition has been set up at Change.org. People have been using their blogs to spread the word and advocate action. It is our community at its best. Let us hope that it will help this family quickly have a positive resolution. I encourage everyone to offer support to this family and to sign the petition. Like her page at facebook and show you care.

What follows are a list of the blogs dealing with this topic, which I will keep updated as I come across new blogs.

Age of Autism

Autistic Hoya

Big Blueberry Eyes

Bird on the Street

BLOOM - Parenting Kids With Disabilities

Donna Thompson

Healing, Empowering and Thriving

Jewish Journal

Journeys with Autism

Kidneys and Eyes

Kristina Chew at Care2

Life With my Special K's

Little Bit Quirky

Love That Max (links to contact info at CHOP)

Moonlit Lily

Not Dead Yet

Parenting Isn't Pretty

Penny's Peeps

Raising Asperger's Kids

Really What Were We Thinking

Social Security Disability and You

Special Children at About.com

Special Education Advisor

Support for Special Needs

Susan's Blog

The Loaded Diaper

Three Puzzle Pieces

Uncommon Sense

you-leave-me-breadless

Please let me know if there are blogs I've missed.

From CHOP, new comment on their facebook page:

Children's Hospital of Philadelphia

To our Facebook community:

We hear you.

We feel and understand your frustration, but we are unable to comment publicly on individual cases.

Each child is unique, and our goal is always to provide the best possible medical care for each individual patient.

Please know that CHOP strives to partner with families and make appropriate decisions based on input from many sources, none more important than the patient’s family.

Anything less would be completely inconsistent with the values we work to uphold every day.

We are also taking action to review all existing policies to make sure that they reflect the core values we live by, including our deep commitment to not discriminate in any way.

The Children’s Hospital of Philadelphia is an institution. But more important, we are a team of men and women whose life’s work and greatest passion are the care of all sick children and the support of their families. To be entrusted with the care of these children is a privilege, one we take with the utmost seriousness.

Let's hope that this will lead the ethics committee to careful deliberation and this doctor to reconsider his beliefs about those with cognitive disabilities.

Showcase: Gabrielle Kaplan-Mayer

2012-01-14T08:54:00.002-06:00

Cooking to Connect and Communicate

By Gabrielle Kaplan-Mayer

www.kitchenclassroom4kids.com

We are fortunate that my son Georgegoes to school just half a block from our home at our local elementary school.He is an autism support classroom there, but our school district makes a greateffort to include George and his classmates in school events (Cheltenham'srecord on inclusion is one of the reasons that we bought a home here severalyears ago). This coming Monday, the school is hosting a service day in honor ofDr. Martin Luther King, Jr., as so many schools, places of worship and otherorganizations are doing.

One piece of the service day thatMyers Elementary is sponsoring is for families to bring a home cooked food thatwill be delivered to a homeless shelter. This is a project that my son will beable to engage in—and enjoy participating. We have been cooking together sincehe was four years old and I share our experience and the benefits of cookingtogether in my children’s cookbook “The Kitchen Classroom.”

I will cook this at home with mykids on Sunday afternoon. It makes me happy that my son can be of service toothers through helping to prepare food. I know that many of the themes of Dr.King day are too abstract for George to understand at this point in his life,but I absoluetly believe in the value of instilling a foundation of doingservice in him, just as I do with my daughter June. It would be hard for me totake George to do some of the other big service projects in our area: the sheernumber of people and the noise generated in the space where the service willtake place could easily overwhelm him. But cooking for others at home in ourkitchen is the perfect kind of service for us.

George, like many other childrenwho have autism, is especially loving and it is interesting to me to watch theway that he doesn't notice a person's skin color, their size, whether theirclothes or old or new. Both of my kids go to schools with diverse populationsand are growing up in a neighborhood where people of different backgrounds mixhappily and easily. George's autism has brought me into the incredible world ofparents who have specail needs children, where I frequently meet people fromdifferent faiths, cultures and socio-economic backgrounds, with whom I have somuch in common with. The bond of having a child with autism helps us to quicklyrelate to each other's lives, despite the differences.

If your community is not hosting aservice day, make these veggies and take them to a local shelter or foodkitchen. If you want ideas for other great recipes to take to a shelter, pullout your copy of The Kitchen Classroom and make a big batch of Mama's Meatballs (p.77), a pan ofCarrot Coins (p. 94) and some Favorite French Fries (p. 96). I think they'll bea hit with the diners!

And make yourself a batch, forgoodness sake.

Ingredients:

1. 8 Potatoes

2. 1 clove garlic

3. 5-6 turnips

4. 10 carrots

5. 1 bunch celery

6. Salt & Pepper

7. Olive Oil

2. You and your child can preheat theoven to 400 degrees F.

3. Your children can wash all of thevegetables (no need to wash the garlic).

4. A grown-up can peel the turnips.

5. Using hand over hand, help yourchild cut the potatoes into 3-4 big chunks each. Put in a roasting pan.

6. Your child can separate the garliccloves. Help your child pull the skin off the garlic (you can loosen it withthe tip of a knife). Put the cloves in the roasting pan.

7. Using hand over hand, help yourchild cut the turnips into pieces. Put in the roasting pan.

8. Help your child peel the carrots(tips for this process can be found in The KitchenClassroom on page 95). Chop into coins andput in the roasting pan.

9. Help your child break the celery(tips for this process can be found in The Kitchen Classroom on page 92). Cut into small pieces and put in the roastingpan.

10. Drizzle with olive oil.

11. Sprinkle with salt and pepper.

Bake for 45 minutes. Every 15 minutes, gently turn thevegetables so they all get well coated in oil.

Gabrielle Kaplan-Mayer is a cooking instructor and parentingcoach who works with families all over the world. You can reach her atwww.kitchenclassroom4kids.com

Showcase: Catrina's Good Morning Autism!

2012-01-09T14:46:00.002-06:00

Please click here to go to Catrina's blog.

Mornings blow. We all know this. Wouldn’t it be wonderful if we could all just wake up and jump out of bed and be happy, and cheery, and ready to take on the world? Ahh, but that isn’t real life, is it?

I’m a neuro-typical adult, and I know mornings are bad for me. Just imagine how a morning for a child with Autism can be.

Below is a video of a mother that is facing jail time because her child with Autism has been tardy to school too many times this year.

Please watch it … and then continue reading.

After I watched this video, I sat here thinking … and worrying … and thinking … and worrying.

Timmy has quite a few tardies already this year. It’s not because he is lazy and won’t get out of bed. It isn’t because I’m lazy and won’t get him up and out of bed. Each and every one of them was due to his Autism.

The Belt – Timmy has to wear a belt every day. We have a routine that he follows when he gets home from school. He takes his belt off and hangs it on a hook. I wasn’t home one day when he came home and my husband didn’t instruct him to put the belt on the hook. The next morning, the belt was nowhere to be found. His bus comes at 730. He was ready for the bus at 7. He didn’t have his belt, though. He was crying and we were looking for it. Finally I told him he’d have to go one day without it. We’d find it for him that day and he’d have it tomorrow. He walked out of the house crying to go down to the bus. When he saw the bus, though, he started screaming and hid behind my van. He refused to go down. He missed the bus. He ended up being tardy that day.

The Necklace- After “The Belt” we made sure to have EVERYTHING ready for him for school for the next day. Clothes laid out. Backpack all packed, etc. The day before, Timmy had received a necklace from a party at school. It was one of those cheapy mardi-gras type necklaces. He had decided this was his new favorite thing. When he had gone to bed that night, I had told him he couldn’t wear the necklace to bed. When I tucked him in, he didn’t have it on. All was good. Except he had hidden the necklace away so his brothers wouldn’t find it, and the next morning he couldn’t remember where he had put it. And …. we had a meltdown.

Have you ever witnessed a child with Autism have a meltdown? This isn’t just a tantrum that a NT (neuro-typical) person has. They honest to goodness think that the world is going to end or something. They cannot see past this one thing. This one thing at this time was that necklace. Nothing, and I mean NOTHING mattered, but that necklace.

And so he was tardy again. (Mind you, while trying to deal with his meltdown and help him find his necklace, I’m still getting the other two boys ready and out the door to their bus that comes 15 minutes before Timmy’s).

These are just two instances. We’ve had others that centered around … socks that were “pokey” to him. We changed his socks 6 times, and all of them felt “pokey” to him. We finally found a pair that he was comfortable wearing. Him getting down to the bus and realizing that there is a tiny little water spot on his pants. Being upset because his brother ate the last of the Fruity Pebbles and only left him Cocoa Pebbles, and even though he had Cocoa Pebbles the day before with no issues, today he will.

Oh yes, I can hear some of you saying “You are just letting him be a brat. You need to not let him rule like that.” I say to you … “You don’t have a child with Autism, and don’t understand.”

He is not manipulating. I know what manipulating is. I see it in children (including my own) quite often. Timmy’s world STOPS. Just stops. There is not school. There is not work. There is not ANYTHING that is more important to him at that moment. You can try to redirect. You can try to talk him down. Sometimes it works. Other times, no. Especially if I miss the warning signs and don’t get it taken care of before the meltdown goes ahead at full steam.

We get up with plenty of time for he and his brothers to get ready for school. We get things all set up the night before, and I set breakfast up and make lunches and pack backpacks in the morning before they wake up. This isn’t a scheduling thing. This isn’t a lazy thing. This is an Autism thing.

I believe the mother in the video should get a good lawyer and fight this. I believe that a good lawyer that specializes in special needs cases could really help her. He is late due to his special need. They should write this into his IEP or something along those lines.

What do you think?

The Help Group and Music For Autism Present...

2012-01-09T13:17:00.000-06:00

THE HELP GROUP & MUSIC FOR AUTISM PRESENT A FREE INTERACTIVE CONCERT FOR INDIVIDUALS WITH AUTISM AND THEIR FAMILIES

ON SUNDAY, JANUARY 29

The Help Group & Music for Autism present the fourth interactive concert for individuals with autism and their families. Music for Autism offers professionally performed, enriching musical experiences in an environment where individual differences are celebrated. The one-hour interactive concert is broken out into three segments to include “concert time”, “conducting time” and “percussion time” where concertgoers are invited to join the experience with their movement and provided instruments.

The show at 1pm on Sunday, January 29, will feature Michael Zonshine & Friends. A Southern California native and trumpeter, Zonshine has delighted audiences across the country with his artistry. He has given performances and masterclasses for many prestigious organizations including the Boston University Tanglewood Institute, USC and the University of Hawai’i at Manoa.

The performance is free and will take place at The Help Group Autism Center Theater, 13164 Burbank Blvd, Sherman Oaks, CA 91401.

Reservations are required and can be made three ways. Email rsvp@musicforautism.org; go to the Concert Calendar section at www.musicforautism.org; or by calling 877-863-7473 ext. 1.

ABC's 20/20 Looks at Facilitated Communication and the Wendrow Case

2012-01-07T09:23:00.001-06:00

In the autism community, there are plenty of heated opinions, which lead to even more heated attacks against those who believe differently. Some of the fiercest attacks come from those who believe in debunked treatments like facilitated communication. No other treatment offers such fantastic results. Autistic individuals who've been unable to talk, write, communicate are suddenly able to speak eloquently with the help of a facilitator.
For a desperate parent, it must be a dream come true--one's child communicating finally, the words flowing. All those hopes and dreams suddenly realized, parents are not likely to be skeptical of this sudden flowering of skills.

For nearly two years, I've been writing about facilitated communication and trying to convey the research and prevent parents new to the autism world from falling for it or its kissing cousin, rapid prompting method.

ABC's 20/20 just ran an entire episode on the tragic Wendrow case, which I, along with James Todd, have written about this past year. This is a must see episode. Seeing this family and listening to their story is far more compelling than dry words on a screen.

For other pieces on the Wendrow case and facilitated communication, please click these links:

Holding Educators Accountable For Evidence-Based Practices: Facilitated Communication Isn't One

Facilitated Communication: A Price Too High To Pay

Skepticism Of Stories To Good To Be True

Facilitated Communication: Bandwagon Endorsements; It All Feels Good

Why Rapid Prompting Method Still Doesn’t Pass the Evidence-Based Test

Facilitated Communication: A Literature Review

Navigating The Autism World: Facilitated Communication Is Still Pseudoscience

Facilitated Communication Quackery Gets Journalistic Promotion In Annapolis

Showcase: Caroline McGraw of a Wish Come Clear

2011-12-31T10:02:00.003-06:00

Please check out Caroline's blog at http://www.awishcomeclear.com/.

An open letter to parents: On what your children remember
[A letter written to my parents, in which I recall how they have cared for my younger brother, Willie, who has autism.]

Dear Mom and Dad,

As your 28th wedding anniversary approaches, I’d like to tell you what I remember about how you’ve raised Willie, and what I’ve learned by watching you.

My first memory is of a diagnostic center, the playroom where I waited as Mom and Willie met with the doctors. When you came out, Mom, you knelt down to hold me, and you were crying. I didn’t know what was happening, but I knew that something was wrong. I realized for the first time in my life that you were vulnerable, and that you needed to hold me. Yet what strikes me now is not the sadness of that day, but the beauty of your spirit. Mom, you reached out for me. You drew me in at a time when you must have wanted to push everyone away.

Likewise, you reach continually out on Willie’s behalf, seeking therapies and doctors and medications and activities and services for him. You encourage him in his interests, yet you also allow him the space he needs for himself, to be himself. You have taught me how to count his small victories, to see the steps of progress he makes as miracles.

Dad, I remember how many times you took Willie with you on work trips, on errands to Costco, to Edie’s for haircuts. You’ve made sure to include him in all aspects of your life. And I have never seen you act self-conscious or embarrassed by his behaviors, strange and frightening though they have been. You model a relaxed, take-it-as-it comes attitude for me and for others, and your corny humor dissipates many awkward moments.

In the times when Willie struggled with violent outbursts and self-injurious behavior, you took on bruises and cuts. You made sure to protect Willie from himself when necessary, and you’ve protected us as well. Rarely did you let the pain of keeping our family together show through. I can’t imagine what that’s cost you. You continue to keep the faith as Willie’s condition improves, and that patient trust is bearing fruit.

Of course, these things do not always come easily for either of you. I have seen you struggle. I have seen you doubt your decisions. I have walked with you into the places where there are no ‘right’ choices, only choices less terrible than others. I have sat with you on the floor of our upstairs hallway, none of us knowing what to do or how to carry on.

We have been totally at a loss, and yet we have never been ‘lost,’ because we have been together.

I love you, and I am amazed by you every day.

Caroline

***

Showcase: Philip Walterhouse

2011-12-20T09:11:00.002-06:00

Aspergers: A holistic experience

Posted on December 18, 2011

Image via Wikipedia

While growing up, I had no idea that I might have Aspergers. It wasn’t until recently that I began suspecting it.

When I was sixteen years old, I was put in a position in which I had to take aparticipating role in my life. It was this experience that made me realize that I could change. I went from not caring about anything to wanting to know everything about life. This was the moment I began to access the strengths of the Aspergers learning style.

There are three characteristics of being an Aspie that I love. The first one is the strong motivation to learn everything about a special interest. The second is the ability to connect many different concepts. The third is the inability to learn common sense naturally.

A person with Aspergers tends to focus on one interest while excluding everything else. This can be a problem, but it also allows us to learn concepts and ideas very thoroughly and extensively.

There has been many “aha” moments in my life where ideas that seemed to have no relation to each other connect. I usually read about ten books at a time, reading small sections from each book during any given day. The books are generally all nonfiction involving my special interests like science, philosophy or religion. I think about what I read all day and sometimes I incorporate it into my conversations. My mind begins to connect thoughts and conclusions from various books and conversations, ultimately converging into one thought pattern.

The third characteristics of Asperger’s is the inability to learn social common sense intuitively. People usually think of this as something that is “broken”, something negative. But the bi-product of this has become one of my greatest strengths. Aspies have to break down social processes, then memorize and practice each step, something which is intuitive to most people.

One of my special interests was social interaction. I didn’t like being around people for too long, but learning how to interact had a solitary aspect to it. Learning how beliefs and values influenced social interactions was fascinating to me. I explored everything from math to science to philosophy to art to religion, in the context of how it affected my social interactions.

During college, I explored every subject I could get my hands on and as I learned it, I always asked myself how this influenced behaviour. This curiosity carried over to university where I began to look at the social interactions that lead to oppression. This was where I went through the second biggest change of my life. It involved a child withAutism, the book Becoming an Ally by Anne Bishop and the HBO show The Wire.

At the time I was a child and youth worker, working with a 10 year old boy with Autism. When I started with him, he had no behavioural program and no goals. It wasn’t long before I was constantly thinking of goals, and trying to understand and change our ways of interacting with one another.

While working with this child, I was reading the book Becoming An Ally, learning about the type of power that can lead to an oppressive environment. I was also watching the HBO show The Wire. It wasn’t until a month into these three activities that I made the connection between them. The show was acting out how oppression happens politically when people fight for power over each other. The book was explaining how fighting for power worked at a personal level and how it was connected to political struggles. I was practicing how to avoid a power struggle at a personal level when responding to the aggressive behaviours of the autistic child.

This scenario of connecting ideas and applying them to my interactions was essential for me to understand the bigger picture and learn how to interact in that picture. I would observe something that would seem insignificant at the time but then realize how it fit into the puzzle of human interactions. After analyzing so many pieces, I began to see how everything worked as unit.

In the scenario of the child with autism, I began to connect the similarities of how we responded to our power struggle, to how people respond generally to being marginalized. I began to see my work as creating an environment where we were learning to behave in a way that did not marginalize or oppress.

It was precisely what my Aspergers enabled me to do that most people viewed as the characteristics that I was the strongest in. Whatever felt disabling about Aspergers was outweighed by what it enabled me to do. This is why I would never trade the Aspie learning style for any other learning style. It has helped me see the significance in how we communicate. It has helped me access the small details of human behaviour that others don’t notice which has led me to a very holistic understanding of who we are.

Thinking Person's Guide to Autism Press Release

2011-12-19T09:06:00.001-06:00

FOR IMMEDIATE RELEASE

Thinking Person’s Guide to Autism: The Autism Book You’ve Been Waiting For.

Redwood City, CA December 19, 2011 — “Refreshingly free of dogma, disinformation, and heavy-handed agendas, Thinking Person's Guide to Autism is an oasis of sanity, compassion, and hope for people on the spectrum and those who love them.” — Steve Silberman, senior writer for Wired magazine and autism/neurodiversity blogger for the Public Library of Science

Thinking Person's Guide to Autism is the book we wish we'd had when autism first became part of our lives: a one-stop resource for carefully curated, evidence-based information from autism parents, autistics, and autism professionals.

About the Editors

The Thinking Person’s Guide to Autism editors are Shannon Des Roches Rosa, Jennifer Byde Myers, Liz Ditz, Emily Willingham, and Carol Greenburg. Each woman writes, educates, and advocates within the autism communities. This project has its foundation in their collective parenting, science, education, and self-advocacy experience.

For more information or review copies of THINKING PERSON’S GUIDE TO AUTISM, please visit www.thinkingautismguide.com/p/press.html or contact our media relations department at 650.260.8742 or thinkingautism@gmail.com.

Publication information:

Available: on Amazon http://is.gd/TPGAonAMAZON and at Createspace.com http://is.gd/BUYTPGA

Paperback: 370 pages

Publisher: Deadwood City Publishing (2011)

Language: English

ISBN-10: 0692010556

ISBN-13: 978-0692010556

Showcase Post

2011-12-18T11:37:00.000-06:00

At the request of the blogger, here is http://alleviateautism.com/2011/12/the-twelve-days-of-christmas-2/

The Twelve Days Of Christmas

on December 13, 2011

On the twelfth day of Christmas,

my dreams came to be…

A Teen Violinist Strumming,

Eleven Pipers Performing,

Ten lads’ a-leaping,

Nine year old hiker ,

Great Maid a-painting,

Social Soules a-swimming,

56 a-running,

Five Star Dancer,

Future Doctor,

Three Cheers Scott,

Two Theaters Built

and a

GHS Homecoming King!

This holiday season, follow your child’s lead…

and reach for the stars.

Autism Science Foundation Recipe for Hope

2011-12-13T10:28:00.003-06:00

Showcase and Vote request--Gregory G. Allen

2011-12-07T11:19:00.001-06:00

Children's Book on Autism (by Gregory G. Allen)

Voting has begun! The wonderful eBook publisher MeeGenius (publisher of great children's books) has started their challenge to find the next children's author. I mentioned in a blog two months ago that I had entered "Chicken Boy: The Amazing Adventures of a Super Hero with Autism" as a tribute to my godson Gabe who was diagnosed with autism when he was very young. His sister Natalie and I formed this story based on Gabe and wanted to share a book for kids - about a kid - told through the perspective of one very special boy that could let people into his 'world' in a different way.

Gabe Watching the Circus

Now we need the help of everyone to get the word out about the book. Voting for round 1 will continue until December 18th. Please click HERE and click the LIKE button to vote. (It seems as if you have to be connected to facebook in order to vote.) We can't wait to see what comes of this book and just hope to make it to the Finalist Round with YOUR help! (The finalist round will be January 31-February 21, 2012 and a winner will be announced by March 7.)

Autism is nothing to be afraid of and we hope with this book to encourage other children to not be fearful of that child in their class that may seem a little different than they are. Children with autism are just like every other kid. They want to play. They have incredible imaginations. They enjoy bugs, snakes, the children's museum, the circus, horseback riding, the beach...they just show their enjoyment in a different way. (And my little guy loves to wrestle with Greggy every Wednesday night after we return from our dinner at Friday's: chicken fingers, fries, ketchup and red velvet cake.)

And they can get to you like no one's business! When Gabe reaches over and grabs my hand to walk into the restaurant - my heart melts!

Thanks for voting! Natalie and I definitely thank you and I'm sure Gabe would thank you too!

Showcase-Jeff Stimpson of JeffsLife

2011-12-03T07:00:00.017-06:00

This week we have the pleasure of showcasing Jeff Stimpson-author, blogger and dad to 13 year old Alex. I hope that you all take the time to read his wonderful post-and go visit him on his blog.

JeffsLife (jeffslife.tripod.com/alextheboy) continues the story I began in my books Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family's Life With Autism (both available on Amazon).

I post more or less weekly about life with my 13-year-old son Alex (PDD-NOS and solidly on the spectrum), the stories being personal about our life with Alex. Topics range from school and activities to eating, sleep, public behavior (see "tantrums") and other topics. I started these essays in 1998, when my son was born almost three months premature and he began what would turn out to be a whole first year spent in the hospital. As a journalist, I soon realized that what I was going through back then was at least as interesting as much of the stuff I had written about, so JeffsLife was born.

The current site's layout is plain (see "ugly," according to my wife Jill) with few links to autism news or other stuff. I've meant to improve this, but I do think it highlights the writing -- what I've learned the hard way is my best, if not only, talent.

JeffsLife is also Tweeted on Twitter and via LinkedIn (I welcome followers and connections, if you're on those sites).

The following is an example of what you'll find on JeffsLife. I hope you can drop by (you might want to turn on your popup blocker), and thanks. You can also email me at jeff_stimpson@yahoo.com.

The Overnights

“You’ll have fun, Alex. Listen to the staff there.”

I’m taking Alex to overnight respite. The program, operated by the agency that provides many of Alex’s services, is mostly for adults: Some live for days in an apartment across town, with buses picking them up for school or their day programs right at the door and dropping them back off at the apartment at day’s end. Overnight guests also go bowling or to parks, go to movies or to other New York attractions. Their parents stay home and sleep.

(I have two questions: 1) Can Alex’s dad stay in this program instead? and 2) How long before some politico decides that funding for Overnight Respite simply isn’t important enough for people like my son?)

We hope that when this program is humming in our lives, it’ll help get Alex out of the house, which he wants to do (a 13-year-old who wants to get away from his parents now and then: somebody call “60 Minutes”), and it will help us recharge from the drain that is living with Alex as he gets older and bigger. It’s potentially a dynamite program. Alex almost screwed himself out of it late last winter.

He ran from the apartment and explored the building. He refused to listen to the staff. He hogged the TV. The staff’s response was to let him get his feet wet by the half- and then full-day stays, instead of overnight; they helped arrange for a 1:1 para, too. “If you took me to a strange place where I didn’t know anybody I wouldn’t know what to do, either,” the program director told me. “Tell him he’s going to have fun.

“We’ll work with you to get him respite ready. Tell him beforehand that he’s going to go and he’s going to have fun, and that he has to listen to the staff…”

“You’ve going to have fun, Alex, and you have to listen to the staff,” I say as we head in on the first morning. There is indeed a lady to para-shadow him on this first half-day. They want to know where to take him. I recommend the Mac Store and the FAO Schwartz. “Here’s his transit card,” I say, and I prepared this note for you to refer to…” Alex likes going into Laundromats and looking at the machines. He also likes grocery stores and helping pick out and bag the produce. He will pick items off the shelf if you tell him what kind and point to them and tell him how many…

“We’re all set,” they say. “You can take off. Say bye to daddy, Alex.”

“Bye, daddy!”

I spend the morning buying wine, sitting on benches, picking up paperwork from Alex’s pediatrician. My dogs are howling when I swing back by around 1 o’clock.

“How’d he do?” Last time I asked this in this place – how many weeks ago? who can recall when you’re parenting autism? – I got wags of the heads and promises to work to get him respite ready.

“Excellent!” they say. No running away? No bolting? No.

By week’s end, Alex is doing full days. That Friday afternoon, I’m on a bench nearby when he gets off the city bus with his para. For an instant I see a woman and a tall boy, almost a man, before I recognize his lope. He looks like a guy headed into something new.

Showcase: Sarah McCullochs's The Reality of an Autistic Person

2011-11-30T17:10:00.001-06:00

The Reality of an Autistic Person

Imagine you’ve gone to a different country, one where people speak your language but the way they live their lives is completely different to how you do it. Any time you ask someone a question, like what sort of currency they use or what public transport is available, they look at you like you’re crazy and tell you that you should already know. Worse, every so often, others will tease you and point you out to other people as someone who doesn’t get the simplest things. Angry, frustrated and confused, you give up asking questions and try to avoid having to speak to anyone about things you don’t understand. You try to work out what’s going on by watching the other people around you and trying to copy what you see for the duration of your stay.

Now imagine that you are autistic, that that country is your society, and the duration of your stay is the rest of your life. This is the reality for autistic people. We have no idea, literally, what you think you are doing when you ask us to go for a quick drink in the pub. This won’t apply to everyone of course, but for many autistic people, a typical thought cycle on being asked to go for a social drink in the pub is something like this: “Where am I going to sit? What are we going to talk about? When will it be appropriate to leave? What if there’s an awkward silence? How do I order a drink? What if there’s a queue? How do I queue? Why do people all crowd around the bar if I need to queue, where should I stand? How do I know what to order? How will I know how much that costs? If I’m going with this person, are we going to queue together? Who goes first? If I get a drink first, how am I going to decide where to sit? Should I stand with the other person while they get a drink? If so, are we going to make small talk? What are we going to say? If they get their drink first, should I ask them to wait? Should we choose somewhere to sit that’s quiet so I can hear them, or somewhere I can use the surrounding environment to act as distractions for me or opportunities to say things? When we sit down, how quickly should I drink my drink? If I drink it quicker than them, does that make me look bad? Is it acceptable to buy another one if they drink much slower than me? If I drink really slowly, are they going to feel obliged to not buy another drink if they want to because of how slowly I am drinking? I don’t want to ask any of this of the other person, they’ll think I’m stupid. Normal people don’t ask these things. I can’t deal with it. I won’t go.”

That’s before you even get to the art of attempting to hold a conversation with something that isn’t exclusively on your obsessive interests. The sheer anxiety of having to answer all of these questions will perhaps explain to you why I refused to go to any event exclusively deemed social until I was 19. I went to a grand total of two birthday parties during my entire time at high school, not because I wasn’t asked, but because I found the two I went to so stressful I decided it wasn’t worth going again. While I slowly got over this aversion, to begin with I had to organise socials for different groups that I ran in order to justify my existence in a bar. It wasn’t “social”, it was “work”. That made it marginally less scary. I’m still not a fan. Perhaps those of you reading this will now now why I appreciate being asked to house parties (validation that I am accepted into the group) but don’t actually go (People! Noise! Crowds! Uncertainty!).

The fact that other people don’t get these extreme anxieties and will regard you as weird if you try to deal with them makes it harder to get answers to the questions that make you so anxious. I refused to go to a hairdressers until I was 15 because I thought that the spaceship style hairdryers would burn my head off and I didn’t want to go anywhere near them. I didn’t want to tell my mum about this because the fact that other people were using them clearly meant that there was a reason people were using them that didn’t involve burning their head off, and I thought she would laugh at me. But I couldn’t ask, so I made my mum cut my hair until I finally volunteered to go to a Supercuts – notable for not having hairdryers at all and thereby allowing me to avoid the issue altogether. And even though I am writing this as if I’m over it, I still haven’t set foot in a hairdressers that has one…

Maybe you think that if my parents had tried to socialise me at an earlier age, this wouldn’t have been a problem. Well, they did try. My mum used to try to invite other children round when I was small, but I didn’t like them because I thought they were boring. I refused to invite anyone from school round during the holidays: when my mum asked why, I replied, “I see them all the time at school, why would I want to see them out of it?” I spent my time reading, watching children’s TV, and making mud pies in the garden. I enjoyed reorganising cupboards and making inventories of my toys. I obsessively played the same 15 songs that I really loved over and over again. I was mostly alone, I enjoyed being alone, and when my parents tried to take me to play with other children, I made it very clear that I didn’t want to be anywhere near them. But sometimes parents’ well-meaning efforts to “socialise” their child can make things a great deal worse: when I was 8, I was taken to a friend’s birthday party. I got there to discover it was at a sports centre and everyone was playing games. I was dressed in sports gear, handed a hockey stick, and expected to immediately join in a loud hockey game I didn’t know the rules to with 12 children I’d never met in my life. I totally freaked out, refused to leave the bench, and sat watching the game until I was rescued from my parents’ anger by the birthday child’s mother, who let me play computer games outside the sports hall. My parents decided to punish me for *their* humiliation and took me home before the lighting candles on the cake, the part of the party where I knew what I was supposed to be doing and knew I’d get cake as a reward for awkwardly singing “Happy Birthday”. That experience largely stopped me wanting to go to birthday parties again. I still feel bad when I think about it now.

The autistic community is largely united in spending a great of time alone in their childhood, but are split into two different camps on whether that was because they wanted to play with other children and couldn’t work out how or were rejected by them, or whether they actually just didn’t find other children interesting and wanted to ignore them. I was largely in the latter camp and it wasn’t until I hit puberty that I really noticed the existence of other people at all. That might seem strange to you, but I really did view other people as walking furniture that were as relevant to my life as the table I sat at. I talked to them when I wanted to get something done, and I cried when they were cruel to me, but that was as far as it went. The only reason I wanted friends was so I had someone to sit next to when we had to sit down and I didn’t have to deal with the anxiety of working out where to sit or being bullied for sitting alone. The happiest memories I have of my childhood was when the people around just let me get on with my thing and went with what my history teacher kindly called my idiosyncrasies. At holiday club, I built a shelter out of a table and tablecloth and spent a lot of time just sitting in it – a wise youth worker told the other children not to bother me and I really enjoyed that particular summer. A cool RE teacher used to throw all the other kids out of the reception room after school and let me stay and read the room’s bookshelf on my own.

By contrast, when I was 17, someone sat in my chair in History. I asked them to move. They refused. I appealed to my teacher. She told me to sit down and stop being silly. I sat on my bag next to her and proceeded to make pointed comments about how I wanted my chair back for the next twenty minutes. My history teacher told me to stop being a bully and get over it in front of the entire class. I uncontrollably burst into tears and had to leave the rest of the lesson. It was incredibly and mortifyingly embarrassing for me and my teacher, who told my class that no-one was to ever sit in my chair again. They didn’t.

I should point out that none of that was explainable at the time. If you had asked me as I sobbed my eyes out in the school toilets why I cared so much about sitting in “my” chair, which was no different from any other chair in the room, I wouldn’t have been able to tell you. Now I can tell you that it’s an aspect of autism to keep the same routines as much as possible in order to avoid anxiety over the uncertainty of having to make a choice. Sit in the same place, eat the same food, wear the same clothes, and you don’t need to deal with the paralysis of having to choose between more than one option. All of my socks are exactly the same colour so I don’t have to worry about it. You can work out ways to deal with things that make people think you’re a massive weirdo, but I don’t think they will ever go away. Maybe you think I don’t seem that bothered anymore about people sitting in the same chair that I always sit in? Maybe you didn’t notice that I sit as close to that chair as possible…

My life changed when I hit 18, left home, and had a chance midnight conversation with a flatmate who was sufficiently drunk he didn’t mind repeating himself over and over again until I understood that I had no regard for the feelings of other people because I hadn’t really considered that other people had feelings. That might sound a bit cold to you, and perhaps a bit strange that I had made it to the age of 18 without realising that, but that’s how undiagnosed autism works. You don’t realise you have a problem negotiating other people’s feelings and social cues because you actually aren’t aware that there *are* other people’s feelings and social cues that are different from your own, let alone that you aren’t paying attention to them. All we understand is that authority figures and peers punish us for things that they won’t explain properly, and we don’t know why. You can learn that people get upset when you shout at them when you’re angry, but you’re simply observing the reaction rather clinically. Making the link between how you feel when people shout at you when they’re angry and how other people feel when you do it to them, and the fact that these two feelings may well be different, doesn’t happen automatically the way it does to other people.

This is especially true if, as is the case for many autistic people, you look down on emotion as illogical (if *anyone* says this to you, break out the diagnostic tools). Maybe you’ve had a conversation with an oblivious autistic person who’s just upset someone and you’re trying to explain why and you say “And so when they asked you if they looked fat and you said ‘yes’, they felt sad”, that person replied, rather surprised, “But they shouldn’t, that’s stupid” (again, if anyone says this, test ‘em). A lot of well-meaning people will then say “But how would you feel if someone said that to you?” and get the response, “Well, it would be true. Why would I feel down?” It’s hard to deal with that kind of approach, and in my experience, accepting that other people have emotional reactions over stuff that doesn’t make sense to them is one of the most profound and conscious-raising realisations an autistic person can make. Certainly the moment I realised that my comments on my flatmate’s tennis-playing skills were factually true but had nonetheless hurt him in a way that I hadn’t intended, and that he didn’t accept, “But you shouldn’t feel that way” as a reason to stop being hurt, was one of the most significant moments in my life so far.

An important corollary to this is that just because the autistic person just said “but they shouldn’t feel that way”, doesn’t mean that they themselves won’t. Someone may well then call that autistic person fat one day, or tell them they have a friend who would beat them at tennis, and they will be upset by it, but duly apply their own value system and deem their feelings irrelevant. A struggle will then ensure between the urge to be upset and the feeling of disgust that they are feeling upset. This can often result in an autistic people refusing to believe that they are sad, or refusing help and support for depression, because they shouldn’t be having those feelings at all. This can be pretty catastrophic in relationships with non-autistic people if it doesn’t get picked up. The self-aware autistic person has to learn to accept that both they and other people can have a variety of emotions, that that is ok, and that whatever they and the other person is feeling has to be worked into their logical response to things.

Reaction tends to be mixed when I tell people I’m autistic now. A lot of people with experience of autism say, “Yeah, totally, that’s cool.” Others say, “Nah, you don’t seem autistic. You’re just a bit blunt.” Some will flat out tell me that I’ve been misdiagnosed and I couldn’t possibly be autistic in their opinion. I think that’s for two reasons. The first is that I have known that I’m autistic for four years. That’s a lot of time in which to sit down and actively work out how to fit into society, to realise why you feel uncomfortable in various situations and work out ways to cope with them. I know what I can deal with and what I can’t, so you’ll rarely catch me in a situation where I’m being “weird” because I don’t know what to do or feel very anxious. I think the other reason is that if you aren’t an arm-flapping, constantly interrupting, space-obsessed Aspie of the most unself-aware order, people will refuse to believe that there’s anything wrong with you. Because they perceive autism as being something “wrong with you”. It’s not, it’s just a different way of thinking. The reason we get so distraught over it is because the things that make us tick aren’t understood very well at all – if you look at the internet and medical literature, you’d think autism is something that happens to children, mentally challenged people, and psychopaths. The idea that the work colleague at the desk next to you who just seems extremely driven and antisocial might be consistantly refusing to go to the pub with you because they’re afraid is rarely to be found. As are any explanations as to why your otherwise attentive and charming lover might be unable to conceive of why you would be upset that you told them something heart-wrenching and painful and they had no reaction to it (because they have no frame of reference to refer to in order to know how they should feel).

I find this really annoying because I think autistic people are really cool, although I would. If autism renders you incapable of understanding social cues, it also renders you largely oblivious to accepting the status quo. Polite people call us blunt, others call us rude. I call us honest. If your colleague is being a bully and getting away with it because no-one wants to call them out, often the autistic person, unconcerned about the intricate social webs this person has built around themselves will just say, “Why do you keep saying that we have to work as a team when you keep forcing us to do projects we don’t want and which you don’t help us with?” Autistic people will break omerta. They get hated for it because then the non-autistic people have to deal with the things they were afraid to confront. But wouldn’t the world be a lot more straight-forward and easier to navigate if people just said “We seem to be getting quite close lately. I quite like you and I would like to have a casual sexual relationship with you that might lead to something more if both our feelings change but only if we actively agree that is the case – would you like to have a date on that basis?” Maybe in slightly more romantic language…

Autistic people are also extremely helpful, for the most part. I know few autistic people who if asked a factual question they don’t know the answer to, won’t go off, find it out, and get back to you, usually with references and notes on further information. You’ve piqued our curiosity, and now we want to know the answer as much as you do. This is why I ended up learning about EU official chemical risk and safety phrases last night. All that information then gets stored away for the next person who asks. Autistic people are dedicated to everything they enjoy, including people. If they like you, you won’t find a more devoted and faithful friend or lover. Tell us exactly what you want, in plain language, and you will probably get it. Expect us to mind read, and you’ll both be very unhappy without knowing why (if they’re undiagnosed). So when two self-aware autistic people get together, the result is a ridiculously practical but deep mutual understanding. I really like that.

What I am basically trying to explain here is that autistic people, above all, like certainty. We want to know exactly where we stand, at all times, whether that’s in relation to our parents, teachers, friends, lovers, or socks. If we cannot have that information, we get anxious, confused, upset and “weird”. Give us that information, and autistic people have a lot of really awesome things going for us that we would love to share with you and show you how we see the world. Refuse it, and we’re just more weirdos for you to avoid. But believe me, we’re trying to avoid you, too.

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Woman With Aspergers Social Mimicry Survey

2011-11-29T16:29:00.001-06:00

From womanwithaspergers:

I'm trying to find autistic women to participate in a short, ten-question survey I drew up in an effort to find out more about the phenomenon of social mimicry (i.e. imitation the social behavior of others) amongst Autie/Aspie women. I'm looking for pretty much females on the spectrum of all ages (must be at least 13 to participate), cis- and trans- women, self-diagnosed or officially diagnosed, who wouldn't mind answering a short survey about their social behavior and their imitation of the social behavior of others.

The link to my blog post containing the survey is:

http://womanwithaspergers.wordpress.com/2011/11/22/women-autism-and-social-mimicry-survey/

National Study on Parents of Children on the Autism Spectrum

2011-11-08T06:18:00.000-06:00

National Study on Parents of Children on the Autism Spectrum

11/1/11

Hello. My name is Ann Liesen and I am a DoctoralCandidate at Oakland University in the School of Education, Department ofCounseling. I am conducting adissertation study examining the relationship between parent’s perceived stressand quality of life satisfaction when raising a child with ASD. I am also exploring coping and social supportconditions that influence this relationship.

If you are a parent raising a child with autism spectrum disorder between theage of birth- 21 years in your family home at least 50% of the time, I welcome your participation. You may contribute to this study byanswering a survey as honestly as you can. The survey should take approximately 20 to 30 minutes of your valuabletime. To participate simply click on thefollowing link

https://www.surveymonkey.com/s/AutismParentResearch

If you know a familymember, friend, or acquaintance that is parenting a child on the autismspectrum who may be willing to participate, please forward this link tothem. I am seeking parents of childrenacross the entire spectrum of the ASD community.

Thank you for yourhelp! Your contribution will help informbest practice for supporting parents of children with ASD.

Warmest regards,

Ann Liesen, MA, DoctoralCandidate

To obtain additional copies of the survey: Parents, agencies, and organizations mayrequest one or multiple copies of the survey to be sent to them electronicallyor by mail by replying to AutismParentResearch@comcast.net. Pleasestate the number of copies needed, the preferred format for delivery(electronic or by mail), and provide a return address. To protect anonymity, parents are encouragedto provide a return address that is different from their personal residence.

Paper copies with returnenvelops may be obtained at the front desk at: 1270 Doris Road, Auburn Hills, Michigan, 48326.

Studycloses on January, 31, 2012 @ 11:59pm (EST)

Faculty Sponsor: RobertFink, Ph.D. Phone: (248)370-2012 Email: fink@oakland.edu

IRB Chair: Christine Stiller Phone: (248) 370-4047 Email: cstiller@oakland.edu

Research Approval#: 4845

Showcase: Autistic Hoya's "Disability is a Social Construct"

2011-11-02T11:57:00.003-05:00

Disability is a Social Construct: A Sociological Perspective on Autism and Disability by Lydia

(Special Note: Today is Autistics Speaking Day. With the end of midterm examinations and the second annual Autistics Speaking Day, I’ve prepared a special article during a time that might otherwise have been occupied with some intense studying.)

Earlier this year, someone I knew told me about meeting a man who obtained very high levels of education (probably a doctorate) in a technical field and who is reputed as one of the top minds in the entire country in his field. He was sought by some of the most prestigious educational institutions in America. Instead, he chose to work for the government, for one of the agencies in the intelligence community. At forty-something years old, he lives with his mother, who drives him every day to work.

When I told my mother this story, and suggested that he might have been Autistic based on the facts that I know about him, she immediately shook her head and said, “That’s sad. His mother didn’t do the right thing for him. He should be able to live on his own and take care of himself, and take himself to work. That’s not a successful ending.”

“No it’s not,” I responded immediately. “You don’t have to be able to live independently to be happy or a contributing member of society.”

“But what’s going to happen when his mother passes away? Who’s going to take care of him then? He’s not going to have anywhere to go.”

That, to me, is the most significant problem, and it is a societal one.

Disability is a social construct. That may seem like a revolutionary idea, or perhaps the proud declaration of someone who would rather not use an “ugly” or “pejorative” word. But what that means is that the way that we understand disability is ingrained in our society’s attitude toward ability. When most people say or read “disability,” they understand that word to mean a person who is unable to fully participate in typical life activities because of a mental or physical impairment.

Our culture says that to be fully functional and able means that one should be able to attend a mainstream school, complete university or vocational training if desired, obtain housing, obtain and keep a steady job, and marry and support a family if desired -- all without significant outside support or assistance. While it is considered socially acceptable to speak to a college counselor while in high school, see a math tutor for algebra or calculus, and even depend on one’s parents for financial support through young adulthood (twenties or so), an individual is not considered fully able and functional if he or she is unable to do one or more of those activities without significant amounts of support from others.

By this definition, the definition propagated and permeated throughout the societies in which we live, we Autistic people are disabled. Some of us may be more disabled than others -- as some of us are more able to participate in life activities with less amounts of outside support, and others of us do now and will throughout their lives only be able to participate in some of those activities with significant amounts of outside support.

For the other Autistic folk reading this article, please understand that I am not classifying or differentiating “types” or Autistic people. I feel very strongly that you are either Autistic or not Autistic. I do not believe it is possible to make meaningful distinctions between types of Autistic people through terms like “severe” or “mild” or “high-functioning” or “low-functioning.” Those terms are not only demeaning and offensive, but also lack scientific validity. I do not think it is possible to be “mildly” Autistic.

Why is that? Autism is a bio-neurological developmental disability (and there’s that “disability” word again) defined by a certain set of characteristics -- differences in sensory processing, information processing, and communication. Those marked deviations from a typical neurological profile (or, in any case, most non-Autistic people) manifest themselves in a variety of ways -- some fairly positive, some fairly challenging, and others simply -- different. For us Autistics, autism affects and influences every aspect of our lives, throughout our lives. In short -- you either have this particular grouping of characteristics or you do not. You are Autistic or you are not Autistic.

Let me take a moment here to draw an analogy with religion. Of people who identify as religious (and one’s faith, or choice not to align with a particular faith, necessarily impacts all of one’s ideas and beliefs about everything else -- politics, ethics, and otherwise, informing and influencing all aspects of that person’s life), some are immediately recognizable as religious by glancing at them. You might see a man wearing a skullcap and yarmulke, or a woman wearing a hijab headscarf, or a man with a clerical collar -- and you would know immediately that that person is religious. In other cases, you might know a certain person fairly well, speak to him or her quite often, and never think about religion or whether the person is religious -- but that does not change the fact that that person belongs to a particular faith tradition or that that person’s beliefs about religion are an integral part of his or her identity and worldview (regardless of how deeply involved with “traditional” religious activities the individual may be.)

Similarly, some Autistic people may appear at first glance to be Autistic, based on common ideas of what it looks like or means to be Autistic, while others have become skilled, through life-experience or coaching, at “passing” for non-Autistic. Not all Autistic people are interested in Autistic culture (which, quite frankly, I think is tragic -- but a personal decision.) Not all Autistic people choose to identify themselves as Autistic -- and for a myriad of reasons, not least of which is the justified fear of discrimination or misunderstanding. When you live in a world where people think it is a compliment to tell you “But you seem normal,” and where you are under constant pressure to appear as non-Autistic as you can, that creates an environment where it is supremely uncomfortable to disclose that information.

And like people who all belong to the same faith, each Autistic person -- while sharing a common identity -- is an individual. We are not identical, and we each have our own individual strengths and weaknesses. Autistics are a diverse lot. Some of us speak, and some of us do not. Some of us have attended mainstream schools, and some of us have attended schools specifically for special education. Some of us have gone on to university, and some of us have not. Some of us can effectively advocate, and some of us have not yet learned how to advocate. Some of us can live independently, and some of us need intensive supported living services. Some of us have obtained jobs and worked toward careers in a competitive environment, and some of us struggle to find employment. We are not all alike. But we are all Autistic.

But what does this have to do with disability? Why do I use this word? Because it would be inaccurate, within the context of our society, to say that Autistic people are not disabled. It would also be inaccurate, within the context of our society, to say that no Autistic people are more or less disabled than other Autistic people. Within the context of our society, some Autistic people are more disabled than others, because of how we have come to define and understand ability.

I do not like the word disability. I do not think it should be used. I hope that over the coming generations, it will fall into disuse -- or at least, be redefined. If I could redefine “disability,” I would start with our definition of what it means to be fully functional and able. To be fully functional and able -- outside the context of our particular societal attitudes -- should mean possessing the ability to live a life that is meaningful and satisfactory for oneself, by one’s individual feelings, with the appropriate amounts of support where required to live that life. By that definition, almost no one would be disabled. Nearly every Autistic person falls into that definition -- and I only say “nearly” because I try to avoid absolutes. Notice that the definition that I have proposed does not say anything about independent living or activities of daily life. It is only in our society that “independent living” is a hallmark of being fully functional and able. I do not think that “independent living” has any correlation with the ability to live a meaningful life or to make meaningful contributions to society.

But in our society, I use the word disability. In fact, I use it quite often. And why is that? Because if I need to advocate on behalf of Autistics in order for us to receive needed services or supports, or for systemic changes to be made to benefit Autistics, I have to use the word disability to get attention, to be taken seriously, and to effect those changes.

I think this is a tragedy. I think it is a tragedy that while there are parts of the world -- usually rural, “undeveloped” (another word with such nuanced connotations behind it) areas -- where people who need significant amounts of outside support are welcomed and supported by the entire community, and where this is natural and normal, it is abnormal or exceptional in most of the “developed” world, and indeed, in the places where most people live. We look down on people who require significant support from people, especially non-family members. We pity them. Sometimes, we think of them as burdens to society because of the public funding that goes to support them. In these other parts of the world, in these isolated hamlets, these people are equal parts of the community that joyfully supports and encourages them instead of reluctantly giving to charity cases.

That is why I found my mother’s response to the story so problematic. It encapsulates, in only a few fell sentences, the attitude our society has developed toward ability and disability.

I am Autistic. For now, I am disabled.

Today, I am speaking.

Showcase--Ilene from "My Family's Experience with Autism"

2011-10-28T05:53:00.000-05:00

This week, I had the pleasure of interviewing Ilene from My Family's Experience with Autism. It is a very straight forward and honest blog-sometimes funny-sometimes hard. ( Here is one of her favorite posts). I think that it would be worth your time to go and check it out.

1) Tell us about yourself.....likes, dislikes, favorite things to do....silliest thing you've ever done...where do you see yourself 20 years from now.....what would you tell yourself (if you could) 20 years ago?

I've always been a very goal oriented person. I always had my to-do lists and would get things done. I guess you can call me a go-getter. And I still am. I volunteer for things even though I know I don't have the time for it because I know I can figure out a way to "squeeze it in". And I had my life planned out. Then life actually happened. 20 years ago, I always figured I'd be one of those who had it all.....family, career, the perfect balance. And it worked for a while. When I had 1 child, balancing career and family was (reasonably) easy. Then after the twins were born, everything changed and I chose to stop working and become a Stay At Home Mom. And I have NEVER regretted that decision. And, given what's happened, I'm extremely happy I went that route because I don't know how I could balance a career working in medical research (what I had been doing) and autism in the home. My life became more predictable. My life became a schedule. I'm not saying that's a bad thing.....change often isn't a bad thing and just because things turn out differently than expected doesn't make it a failure. But there have been times where I wish I could have told myself in the past that things don't always work out as you plan. And sometimes, you need to follow the path as it lays out in front of you to see where it leads....you never know what you may find down an unexpected detour......

I really am quite a boring person. I always did what others expected from me, not really because it was expected but because I wasn't daring enough to push those boundaries. I like relaxing with my family and traveling to tropical locations. I love going snorkeling in the Caribbean and downhill skiing (not that I've done either of these in ages). I have hobbies that allow me to sit while watching TV including crocheting and knitting and I enjoy avoiding having to play (unsuccessfully, of course) the made-up games of my typical 6-year old. The silliest thing I've ever done is sing karaoke while vacationing and even in front of my in-laws in a bar after my brother-in-law's wedding (you have to know this when I say that's silly -- I CAN'T SING!!!!!). I went to college then graduate school and then went to work. I married for love and we've been together for over 13 years and have 3 wonderful children to show for it. Boring, predictable me....I guess that prepared me for what was to come. I now HAVE to be predictable. I MUST be a steady rock for my kids so they know what to expect. Things in this world change. But "Mom" can't. She is always the same. And because of that, at this moment, I can't imagine where I will be in 20 years. I just hope that my kids will be capable of being on their own so that I will have some of the freedom at that point that I currently lack.

Autism HAS taken over my life. Even when I'm not with my children, I'm thinking about the subject. Either of my own kids or about advocacy. I "admin" a Facebook page (http://www.facebook.com/CareAutism) and am trying to start a career as a parent advocate, even though I'm not fully sure what it means. I have used my blog to cope with what I learn, to educate others, to vent or brag about things that are happening, and it's another one of those things that is often just on my mind. New opportunities for me to reach out about autism from a Mom's perspective keep cropping up and I can't turn them down. I've actually made Autism Awareness a personal mission for myself -- I need for people to GET IT!!!!

(2) What's it like having twins? Especially after having one child? Was it a shock? Was it overwhelming? Has it gotten easier as they have gotten older? How did you oldest son deal with all of a sudden having 2 siblings?

I was already freaking out about having kids close in age BEFORE learning I was expecting twins. My brother and I are nearly 8 years apart as are my mother and uncle (with no one in between). THAT is what I was used to. Then when I was told that I was carrying twins (at 6 weeks pregnant), my first reaction (other than holding to the table for dear life) was "I CAN'T BE HAVING TWINS -- I HAVE A NEARLY 15 MONTH OLD AT HOME", like that was going to change reality. But honestly, once I got over that shock and had some time to prepare, I really like the idea. They all have playmates (of a sort). They grow up together and my older son doesn't even remember life without his brother and sister. I think, for HIM, the fact that we had to leave them in the NICU for a few days really helped.....I was gone and then came home a few days later. He got to see pictures of his brother and sister before they came home and changed his life. By the time we were all under the same roof, he was ready for it all. But one thing's for sure -- parenting multiples is NOT the same as parenting singles. Not that it's harder, or more demanding.....it's just DIFFERENT. Having kids close in age isn't quite the same thing. I wouldn't change it for the world, and I consider it a privilege to have the opportunity to be a mom to both a singleton and a pair of twins.

(3) Were you surprised with the ASD diagnosis for your twins? How did that change your perspective on life and on parenting?

For Simon, not really. The subject had been brought up at least once before about 6 months before we learned the truth, and even though I wasn't ready to hear it or accept it, I think the thought was growing in my mind, even if I didn't realize it. When we were first asked if we wanted an autism work-up done on him, that just seemed like the right thing to do. And we might as well do it for Rachel to, not that we have anything to worry about. WOW!!!!! Was I ever wrong!!!! A month later (approximately), a developmental pediatrician told me they were BOTH on the spectrum. I was upset about Simon of course, but learning about Rachel was just devastating!!!!! Looking back, everything was there. The behaviors, the lack of eye contact, the lack of interest in others...but I never saw it. I think it took until we started seeing success with ABA approximately 6 months later before I truly realized that she was also autistic and not just Simon, even though I was able to say it to others. And when the school psychologist AND the developmental pediatrician at Kennedy Krieger told us that both of them had "Severe Autism", it was another shock.

Learning something like this DEFINITELY changed my parenting style and many other aspects of my life. What I was doing wasn't working. My older son who is not at all on the spectrum is a very independent learner. He loves to be with his friends and work in groups. He loves playing sports. All these things that when you become a parent, you expect to see in your children. When you learn about an autism diagnosis, you realize that YOU have to step in to make these things happen. YOU have to force the eye contact -- they don't seek it on their own. YOU have to encourage them to want to communicate, because (again) it won't happen on its own. YOU have to teach them how to interact with others. YOU have to be the example that would normally be set by their peers because they won't seek out their peers, but can't avoid YOU. YOU have to slow down and take things step by step. It changes YOU and often makes you appreciate all the wonders around you. YOU have to work through the sensory aversions and determine what you want them to appreciate. YOU have to learn to speak their language because, even if they are verbal, their ability to express feelings is slow to develop. You always have to read "between the lines".

It also taught me that I have to learn to advocate for them. I have ideas of what they need; of where they should be; of what they should be able to do. And it's MY responsibility to make sure they are in an environment that will allow them to succeed. I searched for 2 years to find a dance class that can accommodate my daughter. I finally found it this fall and she is taking a dance class. And she LOVES it!!!!! She looks forward to it all week long!!!!! And I pat myself on the back because I made this happen for her. I kept looking. I kept asking questions. I convinced someone to develop a program to allow for kids with her unique needs and abilities to have a place they can go, just to dance -- something that all little girls should have the chance to do. And it has driven me to want to become a parent advocate professionally.

(4) What would you tell a parent new to diagnosis?

I would tell them that this is not the end. Not by any means. This is just a new opportunity to help your child now that you know that he or she doesn't think or learn in the same way that was originally thought. People with autism do learn. People with autism do feel compassion and empathy. People with autism just see the world a bit differently. I would also remind them that they are seeing the same person today that they saw yesterday, before learning that they were on the spectrum. They were loved before, they are loved now. It's just now you realize how special they are and that they need you to address things in a different way. I have learned more from my children because I have been forced to see things from their perspective. I have learned to slow down. I have learned to embrace every little detail. I have learned to SEE every little detail because that's what they need for me to show them if they are to understand what I am trying to teach them.

(5) What is the most important thing you would want people to know about your family?

That we are simply a family. We live together -- Mom, Dad, 3 kids, and a dog. We love each other. We fight amongst each other. We run around like crazy people to accommodate the Saturday extra-curricular activities. And we live with the reality of Autism. We have our good days and our "A-days", or at least our "A-moments". Everything we do is based on a routine. We can no longer be spontaneous. Even if it appears to be that we are doing something spur-of-the-moment, we previously planned for it. We thought out the pros and cons. We thought about how we would handle potential meltdowns. We have the goldfish or the gummy bears in a bag in my pocket, to be pulled out if the need arises. And our lives have continued, thanks GREATLY to the Big Brother!!!!!

But most importantly, WE ARE A FAMILY!

Shatner Will Always, Always Rule

2011-10-18T18:41:00.003-05:00

For all our fellow geeks and nerds and Star Trek lovers.

--KWombles

If you liked Star Trek or Boston Legal or Shit My Dad Says (or T.J. Hooker, or any of the other shows Shatner has done over the last five decades), reading Shatner's latest book is a bright spot, a delight. If you pop for the kindle version, you can even listen to Shatner read it (which I may very well have to do!).

Shatner's book is an easy read, flowing gently and meandering as it suited him. Shatner makes the rules. At 80, he remains humorous and charming. He's also pretty damn frank in this book, too, and if you think he feels fondly about George Takei and Nichelle Nichols, you'd be wrong. Thirty some years of the mutterings of his co-stars has had its effect, and he doesn't mince words. He also points out how stupid that kind of emnity is given their advanced ages and how they could better use their time.

If there's one thing that's abundantly clear it is that time is something Shatner uses to its fullest. He's a busy man, even at 80, and making the most of his time. It's inspiring to read and see that 80 can be even busier than 40, filled with good work, good friends, and close family.

Shatner is bluster and swagger and primal male, still. But Bill, he's a nice guy, a family guy, and a gentleman. I like them both very much.

It was a lovely book to read, and Lily's excited to read it next. We love Shatner in this house, no matter what his age or what he's playing in. All the Shatners in one evening is fun to do, and Rosie was disappointed when Shit My Dad Says was canceled. She adored watching Star Trek and then diving into the new show when it came on. Neither girl ever worried or wondered over the marvel of seeing a young William Shatner and an old William Shatner. All they cared was that it was Shatner.

Here's to hoping for another twenty productive years, Bill. You rock! I grew up watching you, am growing old watching you, and am honored to watch my children grow up watching you act, listening to your music, and reading your books (TekWar and the Star Trek books!). You have shaped me and permeated my life. When I'm down I listen to The Transformed Man. Thank you for your contributions. You'll always be the best Star Trek captain. :)

2011-10-15T13:41:00.001-05:00

Showcase-Floor Time Lite Mama

2011-10-12T06:33:00.000-05:00

This week, I have the pleasure of interviewing one of my favorite bloggers-Kajoli Tankha of "Floor time Lite Mama" I have always found her writing to be beautiful-soothing..even when she is writing about difficult times. I have placed one of her favorite posts at the end of the interview. I hope that you take the time to visit her blog. You won't be disappointed.

Tell us about yourself? Your life..your favorite things to eat..favorite things to do..

I am the mum of a 6 year old child with autism and apraxia.

I work full time in Consumer Insights. Between work and life and autism life is very full . But its also very good

I am married to the love of my life. He is a Stay at home dad and is one of those people that know how to do everything!

I grew up in India – my dad is a doctor and he was in the army. I grew up in a very close-knit family with my mum, dad and sister. I had a lovely childhood living all over the hidden India – lots of splendid small places with unpronounceable names

I have too many favorite things to eat ( the reason for my cosy appearance) – but among the top are the street foods of Delhi, red velvet cupcakes with cream cheese icing, chocolate mousse and the fluffy down-comforter like cheese omelets my husband makes

I am fickle with my favorite things – but top favorites currently are Fall, Southern small towns like the one I live in , French Press Coffee, the color red , murder mysteries, happy stories , psychology, bloggers, blogging, picture windows, yoga pants, basil, Facetime and of course playing with R,

2) Your blog reads like lovely poetry. Even when you are talking about the hard things. Tell us about your style of writing...is it easy to do? It is so free flowing and yet exact..

Thank you for the lovely compliments in your question . I am all ablush.

It’s not only very easy , but the only way I know how to write.

One of the most important choices in life, is what we choose to pay attention to.

Depending on perspective, life really can be quite luminous( sometimes, even when its on the surface quite hard )

I think that gets reflected in what I write about which is why my blog has a happy feel to it

3) What do you think about autism-the way the world (general public) perceives it..the way you see it...the way your son sees it?

I think that there is a lot of confusion around autism because there is no one autism –

There are many autisms – with the only commonality in all the autisms having social and language challenges

Some of the debate in the autism community can get almost acrimonious, but often we are talking of different autisms.

On top of that our coping mechanism varies greatly.

If my child is suffering and I am the warrior type – I will have a certain way of dealing with it. Versus if my child is quite happy and I am the zen type I will have another way ( and all the permutations and combinations within these extremes )

I have become very very tolerant of other parents’ attitudes towards their children’s autism as long as they love and respect their children.

Its hurts me when I hear parents “venting” about their child in front of their child assuming that just because their child cannot speak – they don’t understand about feeling like a burden.

I wish parents would look at their autistic children and think about the strengths they have and not compare them with neurotypical children.

Like they say, if you measure a fish’s abilities by how well it can fly – you will always see the fish as a failure.

I and DH (him particularly) have a very accepting attitude towards autism.

Though R gets a lot of therapy and help – we have never thought in terms of curing autism.

In fact, we don’t really think of what he has anymore – we just think about what he needs.

We have really questioned a lot of the models of looking at autism-

Autism is not a shell through which R needs to break through. Autism does not preclude independence. Becoming normal is not the only way to be happy. Doing well in school does not mean doing well in life ( and vice versa ). And that a successful life has many versions etcetera

The general public is very aware of autism – things are so different than they used to be.

We can sometimes rail against public ignorance – but really things are so much better than they used to be ( remember “refrigerator mother” days ).

Our friends have really been amazing and accepting of R – autism and all- so we have been real lucky with that

In terms of how R sees himself - I don’t know if R really sees himself as very different or if he knows he has autism. He has had lots of therapy since he was 26 months old and takes hard work as a regular part of life

He probably has a high opinion of himself. He is being raised by a very adoring family.

We don’t really plan on having “the talk”( about autism ) – because we want him to see it as just another part of him. But sort of tell him casually.

And we don’t ever want him to think that there is anything wrong with him.

Often its not the condition, but what we think about the condition that causes the real pain in life

4.) What is the most important thing you would want people to know about your son...your family?:

I think the main thing about my family is love

DH and I are very dissimilar on the surface ––but where it really counts - we are very similar.

We have 3 or 4 organizing principles.

We do our best to be happy , we always prioritize love and caring in many of the things we do , we remember to be grateful

About R, I and his therapists call him our Human Prozac. He is bright, hardworking and sweet and loving .

He is an amazing person and I thank god that he was given to me .

Dances With Rain

Last evening DH and I are settling into watch Medium (a show where a psychic finds suspects by dreams)

DH and I always castigate the show.

Me from a Feminist standpoint (how come the only crime show where the woman is the main protagonist, is one where she catches criminals, not by her brains but by her "feminine intuition" )

DH from a lack of logic from the spirits ( if the dead people spirits want her to find the suspect why do they not tell her the whole story in the first dream- why do it in installments? ).Additionally her family is always on the brink of some crisis or another which provides plenty of opportunities for joint eye rolls.

Despite our low opinion, we DVR and watch it every Wednesday over ginger tea and popcorn after I get back from work.

And enjoy ourselves tremendously.

But yesterday evening its not to be

The new swimming pool( if you can call it that ) is beckoning like a beacon to R

Swib !! he says

Its starting to rain heavily.

But we pretty much say no to nothing for R

( the two things that we say no to are -bad manners or bad for R – that is it- we say no to nothing else. "Following the child's lead " is a Floortime Principle that has pervaded every part of our life )

And of course I can never ignore purposeful communication

So we go out to the pool in the rain

And play all our games.

I must pick him up and swing him according to the chants of an rhyme ( Zip Zap Zoop –right side together – left side together – a rhyme my niece taught me on a train journey once 8 years ago. My dog had died recently and my niece -only 4 – was trying to cheer me up – I have adapted it to Floortime purposes and R loves it )

I am sure he will be fed up with the rain after he is done with the pool and we are both soaking wet

But its not to be

He insists – "Siduh Huduh"( Swing me a 100 times )

By this time we are wetter than fish and I have given up trying to avoid getting too wet.

So after swinging I agree resignedly, when he says "Jumpuh jumpuh jumpuh "

We get on the trampoline which is wet and slick .

Hold hands

Jump higher and higher

Making circles.

Rain has made a little pool in the center of the trampoline and the water jumps up in rhythm with us.

We go on like this for almost a half hour

Interrupted only by the thunder and R's giggles and squeals of "Hyduh "( higher)

This dance in the half light of a dark sky feels like magic

If it is all about not waiting for the rain to pass but learning to dance in it.

Then surely this lovely life has brought me both

Help Group Summit 20011

2011-10-10T14:50:00.000-05:00

Registration Is Still Open For The Help Group Summit 2011: Advances & Best Practices in Autism, Learning Disabilities and ADHD

Friday, October 21 and Saturday, October 22 at SkirballCultural Center in Los Angeles

The Summit will feature 22 experts presenting cutting-edge information in their respective fields. The Summit is open to educators, clinicians, researchers, parents, graduate and undergraduate students. Continuing education credits are available. The featured speakers and their topics are David G. Amaral, PhD, “What Has Neuroimaging Taught Us About the Brain in Autism”; Catherine Lord, PhD, “Early Intervention in Autism and Spectrum Disorders: Alternatives and Priorities” and “Autism Spectrum Disorders Assessment Across the Lifespan”; and Albert “Skip” Rizzo, PhD, “Virtual Reality and Game-Based Applications for Childhood Health Conditions.” With a long standing track record of excellence, The Help Group’s Summit is a thought provoking and state of the art conference that is eagerly anticipated year after year. For detailed Summit information and a full list of presenters and registration, please visit www.thehelpgroup.org or call 818-779-5212.

Thought I'd Visit...Don't Get Around Much Anymore

2011-09-30T06:30:00.000-05:00

It's been two weeks of dialogues at TPGA. As we each work to figure out what it means to be a part of this community and where the boundaries are, I thought I'd share my latest from Countering. --KWombles

Thought I'd Visit...Don't Get Around Much Anymore

"My mind's more at ease, but nevertheless, why stir up memories?"

And ain't that the truth?

I don't get around to many blogs anymore, too many papers to grade, and an ever earlier and earlier bedtime as I find myself worn out. Some nights I beat the girls to bed, and am grateful that Rick shoulders the bedtime duty. I miss some of my blogging buddies, those women and men whose lives I got to share in, but I don't miss the drama of visiting places that are angry, hostile places.

What I have read, though, are the dialogues at TPGA, some of the comments, and many of the posts written by other bloggers in response to those posts and comments. We've been putting those blog posts over at the directory as I'm able to find time to contact the blog writers and get their permission. If I haven't gotten around to you and you've written one, email me and I'll get it up.

When I started blogging in 2009, the autism community seemed to be clearly divided into two vocal camps: neurodiversity followers versus those who believed autism was caused by vaccines. The neurodiversity camp also lined up in opposition to autistic adults who very much want a cure for their autism. Of course, that's an oversimplification, but those were the factions I was initially exposed to. It was easier to find a place, in some ways, because you were immediately routed to one camp or the other based on what you thought about vaccines.

I made several close friends in the midst of blogging, advocating, and trying to make a difference. I made some enemies, too. I acted intemperately at times. I stumbled, occasionally, and I learned a lot. I lost some friends, too, people who quit blogging, or who retreated when something besides vaccines popped up and revealed that there was another line that could create a divide.

The directory that Kathleen and I run, the bloggers we've met through that, has changed my views, tempered my opinions, and led me to react differently than I did back in the summer of 2009. You can't practice inclusion, read hundreds of people with a variety of beliefs and experiences and not come away changed.

What I learned from reading parents who believe a multitude of things that differ from my own beliefs is that they write to reach out, to get comfort, to know they are not alone. Adults on the spectrum write for the same reasons. We all want the same basic things: acceptance, appreciation, accommodation, and to know that when needed, people will act on our behalf for our benefit.

Far too often, they don't find this, even in a community where we should have an abundance of experiences that should lock us together in solidarity. And yet, it often doesn't. Far too often there is rancor and strife and instead of making people's lives easier, we make them harder. Instead of finding comfort, we find drama.

Perhaps we could all spend a little more time asking what we bring to the equation: comfort or drama. And if I've brought you drama in the past, I'm sorry.

Showcase: Jessica of ASLAspergirl

2011-09-29T19:29:00.000-05:00

JESSICA

Social Thinking

During the summer I came across "Social Thinking", which was coined by Michelle Garcia Winner. Basically, social thinking is the ability to think oneself from a social perspective. In order to develop social skills, one must have evolved social thinking process. As an Aspergian, I constantly have to use my intellect to ensure that I practice appropriate social skills, which does not come naturally to me. Having sufficient appropriate social skills took me years to master and through trial-and-error. I was not diagnosed with Asperger's Syndrome until age 30, so a lot of my social skills blunders were painful and frustrating. There did not seem to be a "manual" on how to navigate oneself in the social world.

Now, I am 31 years old and have looked back in my life. It really amazes me that I have had expended so much mental energy in figuring out the social world without any form of guidance. Hopefully that the current generation will benefit from a wide-range of resources related to social thinking. There are an abundance of books that would assist a socially-challenged individual with their navigation. However, one must remember that the social world is everchanging and evolving. What may have worked at one time may not be appropriate for a "similar", but different time.

The most painful lesson that I had to learn was to accept that people's behaviour are "illogical". No matter what people said or have done, NEVER criticize them. They will take offense by it despite your good intentions. I've faced so many angry and frustrated people were deeply hurt by my "critical" comments. My intention was to "point out" why they were in their current situation. I wasn't trying to cause harm to them, but unfortunately my blunt approach wasn't taken graciously. I have a cause-and-effect type of thinking, which makes it difficult for me to stop myself from thinking of causes for current scenarios.

Social thinking is an important skill to develop in order to survive in the neurotypical world. No matter how much you want to avoid or disregard the importance of social skills, you will not be taken seriously if you do not attempt to develop it. You must consider it as equal to your special interests. Consider learning about social thinking as a process to improve yourself as an individual. The more you learn about social thinking, the more you can find appropriate resources to assist you in becoming more socially competent.

Showcase: Laura of Life in the House that Asperger Built

2011-09-29T19:04:00.002-05:00

“Seek first to understand…”

by Laura

Eight days.

“The Dialogues” over at TPGA have been going on now for eight days, and there’s more to come. To date I’ve felt the posters have been respectful, well-reasoned (for the most part), and there has been a give and take happening. The internet being what it is, I’ve stayed away from the comments. I had a feeling it would be there that things would fall apart; where there would be name calling, and finger-pointing. Then, in the comments of another blog I read where things had calmed down today. So I went and had a look.

If I understand correctly, the purpose of this dialogue is to try to find common ground between Self Advocates and Parent Advocates. I think they’re trying to get to a place where everyone can stand shoulder to shoulder with a common purpose and everyone’s point of view is respected, whether it’s agreed upon or not. From what I saw in the comments today, that appears to be a nearly unattainable goal.

There’s no way to get there. One person expresses how they feel, someone offers a different perspective on it, and BAM! It’s on. Suddenly offering an alternative viewpoint is seen as completely invalidating how the first person feels. Further, by pointing that out to the second person, their feelings are completely invalidated too. Self advocates are shouted down for being too capable and not understanding what it is to parent a child with a disability. Parent advocates are shouted down for being too capable not understanding what it is to be a person with a disability.

What about disabled parents of disabled children? Well, if they’re like me, they’re often caught in the middle. To many in both groups, I’m not disabled enough to warrant listening to, and neither are my children. We become invisible. For those disabled parents of disabled children who are not like me, I’m not sure where they fall. I suspect that many have refrained from commenting, just as I have. And that’s too bad if you think about it. They are the only people in the unique position of knowing exactly what it is to be disabledand what it is to parent a child with a disability. They should be the E.F. Huttons in the conversation. That’s not to say that we shouldn’t be listening to everybody, but that’s just it. We’re not listening to everybody. In fact, sometimes it appears that no one is listening to anyone.

I used to think if everyone could just calm down, and enter the conversation seeking first to understand rather than to be understood, we would be able to come together for our common purpose. I no longer believe that. People seem either unwilling or unable these days to really listen. Everyone is just quietly waiting to talk.

“So when you are listening to somebody, completely, attentively, then you are listening not only to the words, but also to the feeling of what is being conveyed, to the whole of it, not part of it.”
Jiddu Krishnamurti

Showcase: Rachel's A Protest March is Not Dialogue

2011-09-28T15:28:00.000-05:00

Continuing our posting of bloggers' thoughts on the dialogue between advocates and parents, here is Rachel's post from today.

A Protest March is Not Dialogue

by Rachel Cohen-Rottenberg

I’ve been doing some more thinking about the Self-Advocate/Parent Dialogues on The Thinking Person’s Guide to Autism.

Like many people, I’ve felt frustrated, angry, and saddened by what I’ve watched go on there. And I’m realizing that it’s because, each day, I show up wanting peaceful dialogue, and each day, I find myself in the middle of a protest march that keeps turning into a brawl. It feels exactly like wandering into a demonstration and counter-demonstration in which the police barricades, put in place to keep people from tearing one another apart, keep getting overrun.

Maybe it’s just me (and judging from the events of the past week, I’m beginning to think that it may very well be just me), but there are things that I’ve always expected from a dialogue, and that I’ve always assumed were both necessary and reasonable:

Expressions of respect for the other party

Listening and responding rather than reacting

Speaking with civility, even in the midst of great anger

Asking questions that go to the heart of intent

Equal time and representation for both sides to express their perspectives

Care and concern for individuals across division

An ability to acknowledge errors on both sides

But here are the things that I’m seeing in the The Dialogues:

Yelling. And I mean yelling that happens IN ALL CAPS because otherwise, MAYBE other people won’t KNOW how WRONG they OBVIOUSLY ARE.

People taking their pain out on one another. I see parents doing it because they feel stressed and abandoned and get to do it everywhere else in the autism world, and I see autistics doing it because they feel stressed and abandoned and never get to do it anywhere else in the autism world. On behalf of both parties, it hurts me to watch.

Accusations of ill-intent along the lines of “You’re just trying to derail the conversation,” as though accusing someone of derailing the conversation — rather than bringing the conversation back on point — isn’t derailing the conversation.

Lots and lots of sentences beginning with “You,” such as “You just refuse to understand” and “You need to park your privilege at the door” and “You have no right to be upset about whatever it is you’re upset about, because it’s irrelevant.”

Anyone here ever try to carry on a relationship in which both parties start every sentence with “you” rather than with “I”? It doesn’t go well. Telling the other person everything he or she has done wrong, over and over, instead of talking about its impact on you and what you want to see change, usually doesn’t get you very far. It’s quite cathartic, but in the end, it damages the relationship, and then there is repair work to do on top of the problems that were there in the first place.

People laughing derisively at each other, judging each other, attacking each other, and accusing each other of saying things they never said and meaning things they never meant.

People treating one another as walking incarnations of all of life’s injustices, rather than as actual people with feelings and thoughts and tears. It’s easy to take a swipe at an incarnation of life’s injustices. It’s quite a bit more difficult to do it when you realize that a person is standing in front of you.

People getting their feelings trampled underfoot on the road to — what? Making life better for all of us? Excellent. But there’s one little problem: I’m not all that interested in creating change with people who think that’s the way to go about it — for the simple reason that I fear for what the world will look like when we get there.

People being unable to acknowledge any wrongdoing, either because they’re oppressed and the wrongs done them are so much worse than what they’ve done to others, or because as long as the cause is right, who cares? So, unlike most people who seem to have moved on as though nothing happened, I’m still pissed as hell at what happened to Emily, and I’m still waiting for someone else to sober up and say, “My God, we’re so sorry. You didn’t deserve that.” And I can feel, in my bones, just how irrelevant people seem to think that is. Who cares about Emily when we’re talking about oppression?

I do. It’s not that I think that Emily is still hurting. It’s the failure to take responsibility that concerns me so much. If we can’t engage in self-reflection and mend things that are broken in our community, how can we have a prayer of mending a broken world?

I’m having memories of my days in Berkeley, when I’d go to gatherings about social justice issues, hoping to listen to a few speakers and have a reasoned discussion, only to watch people yell and punch holes in walls and talk about how it wasn’t such a big deal because people were suffering in the world. Yeah, the wall doesn’t suffer, but the people in the room who watch it happen do. It’s scary, it’s intimidating, and it’s not conducive to dialogue.

Now, I can hear the objections to everything I’m saying here: “Well, we’re oppressed. You can’t expect us to be civil and well-spoken about it. There is too much at stake. And besides, we’re angry. And besides, why don’t you talk about what we’re saying rather than about how we’re saying it?”

All I can say is that, in a protest march, or in a diatribe, you have to yell and say what you have to say, however you want to say it. And I share your suffering, and I share your desire to be loud about it, and I want change to happen right now, just as you do. I’m a member of two minority groups that have suffered bitterly for generations upon generations, so I can hardly be accused of not getting it.

But a dialogue involves something very different. A dialogue involves saying things in a way that other people can hear them. This is not an argument from tone. This is a realistic appraisal of how to work around people’s defenses and get them to hear us so that we can make change. We can’t get people to listen to us by telling them that we’re right and they’re wrong, over and over. They’ll either put up their defenses and start beating up on us in the same way, or they’ll go away altogether. Either way, we’ve lost much-needed allies.

When I look at history, I see oppressed people creating change by forming alliances with the majority, and by doing it in a way that takes the moral high ground. The civil rights movement finally had its day because Martin Luther King, Jr. invited white folk to join him in taking that moral high ground. You had people who had watched their loved ones lynched and raped, but they came together, in the spirit of peaceful dialogue and a yearning for justice, with representatives of the privileged class whose members had done the lynching and raping.

That’s what I keep hoping for: that we carry this forward with some discipline, some respect for the perspective of the other, and some trust that we can make change by being the change we want to see. But after the events of the past week, my sense is that we’re a long, long way from there.

Showcase: Rachel's Impact, Intent, and Dialogue in the Autism Community

2011-09-28T05:41:00.002-05:00

We're continuing to run posts by bloggers on advocacy and dialogues. This time, it's Rachel's eloquent piece. Please remember, we welcome your pieces here, so if you'd like to be showcased, please email me your piece or a link to it to kwombles@gmail.com.

Impact, Intent, and Dialogue in the Autism Community

Rachel Cohen-Rottenberg

This post discusses an issue arising from the Parent/Self-Advocate Dialogues that began last week on The Thinking Person’s Guide to Autism.

For those who haven’t been following the Dialogues, a rather contentious argument arose about a Twitter exchange between Rob, one of the participants, and Emily, one of the editors, in which it appeared to many people that Emily had ill intent. As it turned out, she did not – quite the contrary – and the ensuing conflict was based on a misintepretation. Given that Twitter does not allow for much in the way of nuance or explanation, a misinterpretation wasn’t all that surprising. Twitter probably wasn’t the best medium in which to attempt a conversation about a serious issue in the first place.

K over at Radical Neurodivergence Speaking has a great post up about the whole incident, with a very good discussion of why the larger social/emotional/historical context in which it happened made misinterpretation almost inevitable. If you aren’t familiar with the situation and want to have some idea of what the rest of this post is about, take a look at K’s piece.

I originally began my post as a comment on what K had written. But as I wrestled with my feelings about the situation, I began to see larger issues that I want to explore here.

—
In the context of a world in which autistic people are so often rendered invisible, I understand why people interpreted Emily’s words as they did. We’re used to people not listening to us, and when it appeared to be happening again, people drew conclusions based on life experience. I completely understand it, and for anyone who doesn’t, I hope that K’s post makes the reasons clear. From the outset, I did not interpret Emily’s words the way that others did, but I understand why other people arrived at a different conclusion.

That’s not what troubles me.

What troubles me is that, despite Emily being a respected member of the community with an impressive track record on advocacy issues, the rush to judgment about her intentions was so swift. I watched it happen in the comments section to the Dialogues, and I kept wondering when someone was going to say, “You know, given that it’s Emily we’re talking about, we must be missing something. Perhaps we should ask for clarification.” Instead, I saw commenters looking at the Twitter exchange and then drawing very pejorative conclusions about Emily’s intent – that she was attempting to derail dialogue, to silence autistics, to encourage dismissal, and so on – without asking what her intent actually was, and without considering the fact that the conclusions being drawn and her track record were so much at odds.

In the context of dialogue, the failure to ask about intent worries me, because dialogue involves a willingness to ask questions in order to discern intent. Without that, a crucial part of the picture is missing, and dialogue becomes unproductive.

In fact, a failure to ask about intent ultimately discourages dialogue. Because of the pejorative things said about Emily’s intentions, it’s taken me days to post my feelings about the situation. For the first time since I’ve started blogging, I’ve felt inclined to stay silent about my feelings regarding an issue I care about. And if someone like me could feel that way, I can only imagine what people new to the community must have felt while they were watching the whole situation unfold.

As I’ve struggled with speaking to the issue, I’ve been asking myself questions along these somewhat worrisome lines: What will happen if people misread my words as an attack? What will happen if they think I’m dismissing the pain involved for everyone? What if they think I am assigning ill intent to them?

Will they ask me to clarify my intent? Will they try to understand where I’m coming from? Or will they assume ill intent where none exists?

It’s taken me four days to say: I hope they’ll read carefully. I hope they’ll consider who they know me to be. I hope they’ll ask if something is unclear. But I really can’t worry about that.

—
I know that this whole debacle came out of the pain that so many of us carry, and out of the injustices we’ve suffered. I do. When people read words that appear to be dismissive – even if they are in no way intended to be dismissive – the impact is going to be profound. That reality has to be part of these conversations. And what also needs to be part of these conversations is an understanding that it’s often very ill-advised to draw a conclusion about intent based on impact, especially in a dialogue. When that conclusion is wrong, it can cause a lot of hurt. As a community, we have a responsibility not just to explain why these misinterpretations happen, but also to acknowledge the impact on the person who was misinterpreted.

Emily had people saying some pretty awful things about her thoughts and intentions last week. She’d have to be made of teflon not to feel hurt while it was happening. So while it’s crucial that we talk about the impact of power and privilege and context and silencing and dismissal on us, it’s also crucial that we acknowledge what happens to individuals at the epicenter of these blow-ups, and about the ways in which these kinds of things can fracture a community and discourage dialogue.

So I’m doing now what I should have done in the Dialogues thread last week: I’m speaking up. I hope that people will understand that I’m doing so because I care about the future of dialogue in our community, and because I care about our community being a safe space. If this sort of thing can happen to Emily, it can happen to any one of us.
© 2011 by Rachel Cohen-Rottenberg

Spectrummy Mummy: A is for Advocacy

2011-09-27T16:57:00.000-05:00

Spectrummy Mummy

A is for Advocacy

I have decided to begin an A to Z series of postings. Because I’m the kind of person who just has to start at the beginning, here I am at the letter A. A is for many things. A is for Autism and Asperger’s, of course. A is also for ADHD, another diagnosis for Pudding. A is for anxiety, goodness knows I’ve written about that, and hardly covered how it impacts our life. A is for auditory processing dysfunction. I could keep going, but today I’m starting with advocacy.

Whenever power cuts and my lousy internet connection have permitted, I’ve been following the dialogue series between parent-advocates and self-advocates. I’m glad I have, it has been illuminating, and I’m very gladTGPA provided this forum to air this most necessary discussion. Are we as parent-advocates listening enough to what self-advocates are saying? Can we really be doing so when organizations involving autism research and support don’t consult with adults with autism, effectively barring them from the conversation about them. Who knows autism better? Someone who lives with it, or someone who parents a child with the diagnosis? Both the (ongoing) series of posts, and the many comments have left me with much food for thought.

We have to start listening to what adults on the spectrum are saying, and supporting them in their advocacy efforts, particularly when, especially when we as parents don’t like hearing what they have to say. As was mentioned in the posts and comments, there is a difference between parental advocacy and public advocacy, and it is clear that adults on the spectrum will do a much better role at the centre of the latter. I plan to embrace my role as supporter and ally, learning when to speak out for my child, and when to listen.

I can’t help but think of Pudding, and how she might feel as an adult if her opinions and advocacy efforts were dismissed in favour of mine. It would be absurd, it would be wrong. Yet this is the experience of many adults brave enough to advocate in a world that doesn’t welcome them or their opinions. It is hard, for us as parents who have nurtured and protected our dependent children to relinquish that role as our children age. I saw it in several families when I worked as a carer. I’m certain that I’ll struggle with it too, as most parents do. My job is to help Pudding become as independent as possible, even independent of me.

Pudding herself as an independent streak running through her. If she is able to do something herself, she will do it, and refuse any assistance. Our efforts as parents lie in encouraging and motivating her to do those things that she struggles with, many of which will be necessary for independent living. Her current educational/therapeutic program features some intensive occupational therapy. She makes a game effort, but sometimes the tasks are just too much for her.

One day last week I collected her from school, and her teacher informed me with a smile that Pudding had been “non-compliant” during a challenging activity. Struggling to find the right words to tell her she needed a break, she told the teacher that she (Pudding) was naughty and needed a time out. Her school has a calm room with a ball pit and swings, and her teacher directed her there for as long as she needed. We’ve established goals for speech therapy to learn the phrases to say when she has had enough, and we continue in occupational therapy to find ways to help Pudding learn what helps her to regulate when her senses are overloaded.

My girl is fortunate enough to be in a place where she can assert herself, and she will be listened to and respected for it. I only hope that I can say the same thing when she gets older. As parents, we don’t have to wait to start listening, not when there are adults struggling to be heard right now. It might be the greatest act of advocacy we can perform.

Showcase: Xanthe Wyse

2011-09-27T16:43:00.001-05:00

Readers, do you have a post on your thoughts about advocacy and working together or the role of the various community members in advocacy that you'd like posted at the directory? Email me at kwombles@gmail.com.

I've been emailing various directory members as I have time to ask if they'd like to contribute a post to the directory dealing with advocacy and the community. I emailed Xanthe of Asperger's Child if she'd like to offer something and she gave me permission to post her email response. --KWombles

It's kind of asking the question whether autism/asperger's is a biological variation or disorder. Some people have the view it's a biological difference, evolution, personality extreme. I lean that way too. It's just the way I am. Sure, there are some difficulties, but mostly because society says it's abnormal for me to be the way I am and think the way I do.

I compared to intersex because they get treated terribly (eg infant surgery without consent to conform to society's narrow worldview of what gender should be). Doctors still ignore intersex people (about they were damaged having no choice about their surgery and all the lies and deception and stigma).

I am seeing lots of people sharing their experiences with autism, and some on intersex and other stigmatised issues. Often person experience conflicts with the 'experts'. Hopefully we're all combining together to educate people (including the 'experts' like Simon Baron-Cohen).

I wrote another article about intersex http://baileybear.hubpages.com/hub/Intersex-Born-Between-Male-and-Female. I have a lot of empathy & compassion for intersex people (contrary to SBC's claims we have no empathy).

I wrote a few posts about SBC's strange theories:

http://www.aspergerschild.org/1/post/2011/09/autism-empathy-debate.html

http://www.aspergerschild.org/1/post/2011/09/simon-baron-cohen-social-science-is-soft-science.html

I think stigma comes from ignorance and failing to accept differences (typically in a minority group).

Autism & Oughtisms: What are you talking about? Of Whales, Ripples, and Advocacy

2011-09-27T05:38:00.001-05:00

This morning, we're featuring Autism & Oughtisms' post. If you have a post you'd like to offer for the directory concerning your thoughts about advocacy and dialogues between the different segments of the autism community, please send it to kwombles@gmail.com and I'll get it up. Thank you--KWombles

Whatare you talking about? Of Whales, Ripples, and Advocacy.

Like many others, I have been marvelling atthe unproductiveness of the Self-Advocate/Parent Dialogues over at TPGTA. But Idon’t think it’s a simple failure of compassion of either side (though there’sdefinitely some of that going on). Rather, I see a conversation that doesn’tknow what it’s even talking about.

On the surface it is a meta-discussion,pleading for parents of autistic children, and adults on the spectrum, tolisten to each other. But the validity of the complaint – that one side isn’tlistening to the other – is undercut by a lack of concrete examples to groundthe discussion. This is incredibly important, because in some areas theexperiences and insights of people with autism are highly relevant and a uniqueand much-needed resource. In other areas, the fact that they have autism is aninteresting piece of information but does not give their opinions orexperiences more weight.

If the topic under discussion is “bringingup a child who has autism”, then parenting experience is relevant, but again isnot the be-all-end-all. It’s important to consider the experience and trainingof the person we are listening to, but someone can also talk perfect sense andhave eye-opening insights despite a lack of training or experience (though thiswill be rare with something so life-changing and important as parenting). If wewant a completely informed opinion we might seek out someone who is autisticthemselves, raising an autistic child, and has training relevant to bothparenting and autism. But that’s a rarity. And even if you found such an icon,their religious, political or other beliefs might so strongly impact on theiradvice that it would have always run counter to how you would have raised your ownchild.

So though we’d like to always hear fromthose who tick all the right boxes, we must always at the end pay attention tothe strength of their arguments: The accuracy of their premises, the validityof their logic, the soundness of the conclusion they draw. If their premisesinclude – for example – the experienceof someone living with very mild autism, and the conclusions we arespecifically seeking are ones about the best lives for severely autisticchildren, then that particular premise might seem absolutely key in the scheme of things. If the conclusionwe’re looking for though is one about the way the autistic mind generallycomprehends and interacts with the world, then the severity of autism might notbe nearly as important, and the mere experience of living as an autistic personwould be highly relevant and carry that much more weight.

There are both autistic people, and thosewithout autism, who (as an example of a divisive issue) want a cure and wishautism didn’t exist. There are also those with and without autism who seeautism as a gift and an inherently beautiful aspect of an individual (thatneeds nurturing and support, rather than denial and destruction). There isnothing inherent in the “having of autism” that means you will feel one way orthe other on an issue like this. There may be majorities involved (for example,a majority of autistic people might embrace and cherish their autism), but allthat tells you is “we have a majority here.” That matters in democracies, sure,but never to the extent that we don’t care about or don’t want to hear otheropinions. Majorities are also irrelevant to certain issues and questions, forexample, a majority of the population may say autistic people completely lackempathy if they were asked such a thing, but that doesn’t make it true.

Again, you see that if we don’t knowexactly what we’re talking about – attitudes, opinions, or facts – then it isalmost impossible to expect agreement at a meta-level about “listening to eachother.” Since those engaged with that meta-debate might all agree thatlistening is great, but still get nowhere because the examples and consequencesthey have in mind as they converse, colour and motivate responses thatotherwise appear un-necessarily aggressive. It’s like an unseen whale movingunder the ocean surface. You can see the ocean is unsettled, and talk about howbad that looks when you were expecting and hoping for calm waters, but unlessyou look under the ocean surface to study and understand the cause, you won’tmake any progress.

Even if we take one of the clearer instancesof what someone is addressing in such “self-advocate / parenting” dialogues –perhaps they’re focused on attitudes around the advocacy for disability rights– relevant information is glossed over. Are we talking about advocacy for whatsupports and services parents of disabled children receive; what their childrenreceive directly; or what adult autistics receive? In one of those cases theparents need to be heard the loudest, and in another it’s the autistic adultsthemselves.

Furthermore, the agenda (for example,focusing on parents or autistic adults) may be completely outside of thecontrol of the warring parties. Sometimes the agenda reflects a particular concernat that point in time; maybe children are being focused on because it’s “InternationalDay of the Child” or “Mother’s Day.” Getting angry at others for utilising aplatform they didn’t even create, seems misguided. As do attacks along thelines of “you’ve (as a group) had your say, you’ve been heard, now it’s ourturn.” The voices of people affected by autism, are not mutually exclusive. Oneis the voice of a parent raising an autistic child (whether that parent is NTor ASD, or somewhere in between). Another is a voice of an autistic adult.Either trying to say the other voice is less important or less relevant – atleast, without a very clear context to establish the relevance and importance –is confused and unhelpful to say the least.

I’m not saying we can’t have suchmeta-debates, where we talk about advocacy and relationships between thoseaffected by autism; not at all. What I am saying is that where we see highemotion and lack of progress, it makes sense to try to introduce as clearly aspossible what people are actually talking about; what examples and issues theyhave in mind. What I see is rational dedicated adults passionately agreeing onthe importance of listening, while arguing on the largely unspoken subtext (thedetails and precise issues), in ways that bleed into the “listening” issue;making the disagreement a difficult beast to understand or pin-down, and makingit last longer and stronger than it has to.

It’s hard to have meaningful dialogue aboutthe ripples across the ocean, if you don’t talk about the wind, the currentsand the whales that make those ripples. Only once we tease apart what we’reprecisely talking about, can we figure out where the disagreements lie and why.And since I simply don’t see that occurring over at the Dialogues (yet), I ampersonally weary about getting involved on that platform. I’d be just anotherunder-explained ripple, trying to change the course of the ocean around me.

Autism& Oughtisms (http://autismandoughtisms.wordpress.com/)

Exchanges, Ideas, and the Chance to Not Talk Past One Another

2011-09-26T17:25:00.002-05:00

At this point, most regular autism blog readers are probably aware of the exchanges going on at The Thinking Person's Guide to Autism, as well as the various responses by other bloggers. If you would like the directory to showcase your thoughts on this matter, please email me at kwombles@gmail.com and I'll get it up on the directory for you.

Here's my response:

What We Fight For

Have I said I've been in the trenches now for two decades, fighting to get what my children need? I get tired of the fight, tired of the battle with the outer world to get the resources needed, and so, when Bobby was nine, after he'd had a stroke, I realized I couldn't battle it all. I was worn out. I was tired of fighting for an appropriate education all while fighting the medical system to get him help, and honestly, all while fighting with him to give him the basic self-help skills that would let him be potty trained, be able to dress himself, bathe, brush his teeth, comb his hair, and eat meals without disasters. I was tired of being up for 36 hour stretches since he wouldn't sleep and was destructo-kid and couldn't be left unattended.

Tired, worn, and grieving were the first ten years of my son's life. You know what else they were? Enchanted with his beauty, in love with his smile, delighted when he hugged or cuddled or vocalized anything. As tired as I was, I was completely head over heels for my sweet boy. I made the most of every moment with him, spending long afternoons lying in bed with him, surrounded by his favorite books that we would read over and over, day after day.

By the time the girls came along, I'd had a couple years to process his stroke, the real risks of him having another one, and the break from fighting the school system. After his stroke, we brought him home. No more fighting that, no more. It became about teaching him in a safe friendly environment where his psyche was safe, and we resumed those wonderful afternoons surrounded by piles of books.

Eventually, after we moved here, next door to my parents, we worked at getting him into the day center where he would have the chance to work on socialization skills with others like him, where he would be safe, accepted, and loved. And if you've read this blog at all, you know what a shining, bright young man he is and how far he's come. He is sweet, opinionated, giving, loving, and he makes a difference daily. He is happy, he is loved, and he contributes. He is my light.

after helping me move into my office last month

His sisters shine, as he does. They are my garden girlies, and they never cease to delight and amaze. All three of them adore the others, sit on the couch for our evening sci-fi marathons entwined in each other, the three of them: a grown man who loves to play pokemon and yu-gi-oh with them and who loves them so much that all he can talk about is getting them this $50 video game that he knows they'll love for their birthdays, and these two long-limbed girls: they wrap themselves around each other in complicated pretzels and hug and squeeze and loll on each other in a way my brothers and I would never have done.

I fight for them. I don't speak for them. I don't speak for anyone but me. I teach them that their voices matter, that who they are is wonderful, perfect, and lovely and that they can be what they want to be if they are willing to work for it.

There is a difference between fighting for one's children and speaking for them. There is a difference between advocating for equal rights, equal access, and appropriate accommodations and speaking for others. They have nothing to do with each other. Perhaps people have forgotten that.

I do not speak for autistic people. I would not even were I an autistic individual.

I do not speak for parents of children with neurological differences. It is not my place.

I do not speak for anyone, to replace their voices with my own.

I speak for me and my experiences as a mother with her own issues and invisible disabilities who safeguards her children and fights for what they need, while working with them to teach them to fight for themselves for what they need.

My experiences and my words in no way negate another person's story or perspective nor does it ride roughshod over their own experiences and words.

Maybe if people quit worrying about who's speaking for them and spoke for themselves and let others speak for themselves, there'd be less acrimony and accusations.

Showcase: Drawing Roads: A parents blog about navigating autism

2011-09-26T15:44:00.000-05:00

Autism, Social Behavior and Meaningful Friendship. Forest Sure Does Miss Jenny.09/23/2011

Curtis's "BFF" from Kindergarten to Second grade has transferred to a new school down the road. I have written about their relationship in past posts but to refresh a bit - Curtis and "Jenny" have a unique and devoted love to one another that I have never seen between two kids, ever. Jenny is a beautiful blond who is smitten over Curtis's brains, style and personality. Curtis is an adorable young man who is smitten over her brains, style and personality as well. Curtis use to carry her lunch box for her, draw her maps to his house, walk hand in hand with her down the halls and pull out her chair in the classroom when she was approaching. He got so upset one day when his teacher re-arranged the desks in the classroom and placed her desk across the room from his that he insisted on moving them all back so he could sit next to his BFF forever and always. I will never forget watching him take matters into his own hands rearranging the desks back to the places that they "should be" - I sat back and let him do it with such a smile on my face. He is so devoted to Jenny that this year, as he is forming friendships with some new kids, he is making it loud and clear to them that there is only room for one "BFF" in his life - Jenny. He has voiced that one day he would like to take his BFF and marry her - he has big (but I am assuming quite predictable and simple) plans for this relationship. He has even gone as far as to mention that after they marry and become husband and wife the BFF title will be dropped and no one else will EVER be able to take that place.

Between now and marriage Curtis and myself will be making monthly field trips to her new school to have lunch dates with her, visit her new classroom and play tag at recess. He also has insisted that we stop by a local cupcake shop to get her a cupcake, vanilla of course as she hates chocolate. We have planed to do this "social field trip" the first Monday of every month. In between these field trips, Curtis is writing her letters the old fashion way and drawing beautiful pictures of her (seen in photo). On a personal level I miss "Jenny" a great deal as well - she was always by my side complimenting me on my "style" or scratching Curtis' back if I was too far away. She would always step up and offer comfort to Curtis when I was out sick and make sure he had his water bottle, clip board and red crayon in hand. All of this was not done out of pity, I can assure you that. I have a good sense in reading people and Jenny truly felt connected to Curtis. I will foster this relationship as much as I can while working with Curtis - in a world where social devotion is limited, this is worth savoring.

Caron, 1:1 School Support

Showcase: Sides by Pia from The Crack and the Light

2011-09-25T14:58:00.002-05:00

From KWombles: Most of us are probably aware of the TPGA dialolgues of this past week and the controversies that have come from the exchanges, as well as some of the side posts written on blogs you can find here on the directory.

Pia has written an eloquent and important piece on the inportance of listening.

Sides
by Pia

There is a saying: All politics are personal and local.
We focus on the world, on issues, and on others, based on our own concerns and experiences. We frame the opinions of others based on our own ideas and thoughts. Our perception of the world is the only as valid as our own experience.
I know what I perceive as the color “red”. You know what you perceive as the color “red”. We might both refer to the same thing as “red”, but in reality I have no idea if you experience ”red” the same way I do. That is just the truth of the human experience. We are, for better or worse, trapped in our own heads.
There has been an on-going ‘dialogue’ the last several weeks regarding the nature of advocacy and the disability community.

di·a·logue: a conversation between two or more persons; an exchange of ideas or opinions on a particular issue…. with a view to reaching an amicable agreement or settlement.

I have found this conversation exceedingly frustrating, as I know many have. Both sides (the original posters and subsequent commenters) have tried to communicate. There has been a problem, however, and I think I have figured it out.
It is The Big But.
It goes something like this:
I hear you saying X, Y, and Z….. BUT you don’t understand A,B,C and you should think A,B,C before X, Y,Z.
Oh, yes, I hear what you are saying about A,B,C, ….. BUT I am concerned about X,Y,Z….
A dialogue requires an exchange of ideas with a goal of understanding the other side of the issue and coming to an agreement of some sort. To do this, we have to start by listening.

lis·ten : to give attention; attend closely for the purpose of hearing; give ear, to pay attention; heed.

You will note that this definition has nothing in it that denotes you speaking or expressing an opinion. It is merely taking in information. From listening, you are working toward understanding.

un·der·stand : to perceive the meaning of; grasp the idea of; comprehend; to grasp the significance, implications, or importance of.

Note that listening and understanding do not necessarily mean agreement. In fact, listening and understanding have nothing to do with your opinion whatsoever. Listening and understanding are about the perception of others, which is terribly difficult for us humans (for reasons stated before). But dialogue will never be successful without close and feverish work toward these two goals.
How do we move toward listening and understanding effectively?
Stop speaking. Yes, you.
Ask questions without your opinion interjected. Seek knowledge.
When you receive an answer, listen. The moment your brain goes “But I think…”, stop. Ask again. Listen again. When your brain goes “But what about…” STOP. Remember that listening and understanding are not about you. Understand their position. It is real and valid. You don’t have to agree, but that doesn’t mean you can’t understand. And once you truly understand, you can accept. And you may find common ground.
You may be saying…. BUT what about my opinion??? Stop.

di·a·logue: a conversation between two or more persons; an exchange of ideas or opinions on a particular issue…. with a view to reaching an amicable agreement or settlement.

A true dialogue means you will be asked questions. Answer them. Do not rage at the other side. In fact, as best as possible, do not mention the other side. It puts the recipient on the defensive. Present yours calmly. Explain what it means to you. Explain what you hope to achieve. Explain what you need help with. Be open to educating. Expect that they may not understand at first. Be okay with that. Allow their humanness.
And with all of this, approach others with compassion.
I fear that this community is not really ready for dialogue. I think questioning and listening with a simple goal toward understanding maybe needs to be where we work. Stop talking. Start listening. It is terrifically hard for us, but a struggle worth working toward.
The world is really good at tearing us apart. We are really good at tearing ourselves apart. Let’s not allow it to happen.

*******************

Showcase: Xanthe Wise

2011-09-25T08:28:00.003-05:00

Intersex and autism - biological variation or disorder?

I've been researching intersex for a blog post I'm thinking about for my God Confusion blog.

It is estimated as much as 4% of population have some degree of intersex (biologically between male & female). The medical profession made intersex invisible for decades because it was thought to be 'abnormal'. Most people that are intersex would never know it, because they have typical anatomy for male or female and can produce offspring.

Instead of accepting differences, for decades psychiatrists, psychologists and religious fundamentalists have preached that intersex is a defect/deformity/disorder that needs to be fixed. All this has done is create shame and stigma and many broken people.

In order to fit binary sex categories, many children were mutilated with surgery. In the western world, everyone is assigned a legal sex, and too bad if you're intersex and been assigned the sex that prevents you from legally marrying (heterosexual marriage has also been ingrained by religious fundamentalists).

I've read several comments by religious people that claim intersex people are not entitled to marry at all. Even recently, there has been hate speech and claims that people that are intersex are immoral.

My thinking is intersex is a biological variation, not a deformity (it's society that's turned it into a deformity). The labels 'male' and 'female' are human assignments and people have been mutilated for decades to conform to two categories. Biologically, sex is not binary, but is more of a continuum.

There are over 40 different known 'conditions', mostly genetic that result in intersex. Not many of them result in unambiguous genitalia. Intersex is the preferred catch-all label instead of misleading labels such as hermaphrodite.

All labels are human constructs. By their very nature, they exclude people. Labels often carry stigma - look at the stigma that goes with mental illness. I never tell a potential workplace I've suffered depression, as I won't get the job. Part of the reason I write under a pen-name is because of stigma about the topics I write about. It gives me a buffer against ignorant bigots.

I read some heart-breaking stories by people that are intersex - the suffering they endured being made out to be freaks by society. Advocates educate people about the facts, myths and reality of intersex. One pointed out they are not defined by their intersex - they are a human being and intersex is a part of who they are.

For years autism and Asperger's were seen by the psychology and the medical profession as a disorder to be fixed. Like intersex, it was thought to be rare and abnormal. It is now estimated that 1% of the population are/have Asperger's. Asperger's is on the autistic spectrum and there are plans by psychiatry to dispense of the 'Asperger's' label and just have one category, autism.

Psychology/psychiatry is often at odds with personal experience. Autism advocates have spoken out where 'experts' reinforce stigma.

My thinking is that autism/Asperger's is a variation of human personality. Most of my difficulties come because of misunderstanding from society. Like intersex, any way of behaving differently from the majority of society is seen as abnormal, wrong and immoral. The same goes for atheism.

I am an advocate for autism/Asperger's and atheism because I have experienced first hand the stigma from society of being different. My own family don't accept me for my differences - I don't fit their narrow black-and-white worldview ingrained by religion.

Yet, I am not defined by my autism and atheism. That is not all of me - I am also a mother, a wife, a musician, a thinker, a writer, an INTP. I'm a woman (heck, there's a 1 in 25 chance I'm intersex but don't know it).

I'm heterosexual (and sometimes feel I'm asexual as I don't have a particularly high sex drive). I'm celiac and I'm sensitive. I'm part-Maori and part-European. I'm a New Zealand citizen and an Australian resident. These are all labels that only give a glimpse of me.

I am a human being - a multifaceted human being, not just a single dimension. Here's one that upsets a lot of people - I'm an animal and an ape. Yes, humans are classified as apes. Doesn't bother me - I like animals.

Male and female gender roles are labels constructed by society. Gender is what sex a person feels inside, irrespective of their biological sex. I'm female, but not a 'girly' female. I studied a degree dominated by males. Women were oppressed for centuries. Now it's swung the other way somewhat.

Anyone outside the 'norm' still gets despised by much of society (because of the influence of Abrahamic religion) - feminine boys, masculine girls. Bisexuals, gays, transgender etc. Tribal groups often embraced difference such as intersex and transgender - they were considered special and a gift.

I'm all for accepting differences and not being forced to conform to some narrow black-and-white views imposed on individuals by the ignorance of society. The majority bullying minority individuals and groups into submission.

This can only take place with education and challenging current worldviews. Let's do what we can to discard bigoted stereotypes and promote understanding.

Sunflower Saturday

2011-09-24T19:44:00.002-05:00

Write Fox over Glee.

2011-09-23T18:12:00.002-05:00

From Sue at Delightfully Different, a request for readers to write Fox over the Glee episode.

I hope all of you will write to Fox: askfox@fox.com to request an apology from the writers of Glee. They require the following: In order for us to quickly help you, would you be so kind as to email us with the following additional details:

Your City:
Your Fox Station:
Your Zip Code:
Actual Channel Tuned to:
Cable or Satellite or Antenna?:
--If cable or satellite, your provider?
Type of Set Top Box Used (Name and Model if available):
Are there other times when the problem happens (like during another show or during local news)?:

Unwarranted Conclusions and the Potential for Harm: Rachel Cohen-Rottenberg's Reply to Simon Baron-Cohen

2011-09-19T20:30:00.000-05:00

reprinted with permission

I want to thank Simon Baron-Cohen for taking the time to respond, in his September 10th post on the Autism Blogs Directory, to one of my early pieces on autism and empathy. I am very gratified that he did so.

Unfortunately, I found his response quite troubling. While there are a number of points that concern me, I’m going to focus on the aspects of his piece that speak directly to the most pressing issues.

The problematic nature of the test instruments

My first concern is that while Simon points to studies proving empathy and theory of mind deficits in autism, he does not address any of the many valid critiques of the test instruments themselves. For example, he chose to respond to a piece on the Empathizing-Systemizing (E-S) theory that I wrote over two years ago, when I was newly diagnosed and at the very beginning of formulating my thinking on the issue, rather than speaking to my recent systematic critique of the numerous flaws and biases in the Empathy Quotient (EQ) test or to my earlier piece on the Theory of Mind test. Both critiques discuss serious problems with the primary assessment tools on which his conclusions are based. If he would like his work to be better informed by the ways in which autistic people experience our sensory and emotional lives, and by the ways in which the test instruments fail to take account of the complexity of our experiences, I invite him to read both pieces, along with numerous other critiques and personal accounts on the Autism and Empathy website.

Simon also fails to mention that the false belief test used for the past 30 years to assess theory of mind in autistic children relies upon verbal interaction and language processing, areas in which autistic people are understood to have serious difficulties. In fact, in a 2005 paper, Morton Ann Gernsbacher and Jennifer L. Frymiare point out that the syntactic form of the questions posed by the test is one of the most complex in the English language. The authors go on to cite a study showing that performance on false belief tests correlates with language ability in children with and without autism. In fact, when autistic and deaf children are given a false belief test administered visually rather than verbally, they score higher than non-autistic hearing children: “If one creates a false drawing task that tests theory of mind without reliance on language, one finds that children with autism and children with deafness actually outperform children with normal hearing (Peterson, 2002).”

The misleading nature of the term “cognitive empathy”

My issues with Simon’s work go far beyond the problematic methodology of the test instruments, however, and extend to his use of the term “cognitive empathy” to describe an inability to read and to interpret nonverbal signals. If, as Simon asserts, “people with autism are very capable of an empathic response” when those around us verbalize (or otherwise make clear) their feelings, then our difficulties lie not in the area of “affective empathy,” but in the area of what he calls “cognitive empathy.” By this reasoning, Simon’s theory of autism as an empathy disorder rests on the latter term.

To make clear the misleading nature of the term “cognitive empathy,” a brief summary of Simon’s definitions is in order.

In The Empathy Quotient: An Investigation of Adults with Asperger’s Syndrome or High-Functioning Autism, and Normal Sex Differences, Simon and his colleague Sally Wheelwright draw on a definition of cognitive empathy as “using a ‘theory of mind’ (Astington, Harris, & Olson, 1988; Wellman, 1990) or ‘mindreading’ (Baron-Cohen, 1995; Whiten, 1991).” In Theory of mind in normal development and autism, Simon defines the term “theory of mind” and specifically describes it as a core component of humanity that is impaired in autistic people:

A theory of mind remains one of the quintessential abilities that makes us human (Whiten, 1993). By theory of mind we mean being able to infer the full range of mental states (beliefs, desires, intentions, imagination, emotions, etc.) that cause action. In brief, having a theory of mind is to be able to reflect on the contents of one’s own and other’s minds. Difficulty in understanding other minds is a core cognitive feature of autism spectrum conditions. The theory of mind difficulties seem to be universal among such individuals.” (Baron-Cohen, 3)

In his response to my post, and in numerous other pieces of writing, Simon asserts that both theory of mind and cognitive empathy rely upon an ability to see and to read nonverbal signals. If a person can’t do so, but relies upon verbal language or another form of communication, then that person has an impairment in theory of mind and in the cognitive empathy that depends upon it, resulting in a deficit in “one of the quintessential abilities that makes us human.”

It’s my contention that calling a physical inability to see and to interpret nonverbal signals a failure of any kind of empathy is to make an unmerited interpretive leap. After all, people who are blind cannot see and interpret nonverbal signals — they rely upon spoken language and/or Braille text — and yet, to my knowledge, no one has alleged that blindness is a low-empathy condition. Blind people come to understand the mental states of other people through other means, just as autistic people do. And yet, for an autistic person, a problem seeing and interpreting visual phenomena — and the necessity of taking alternative routes to acquiring the information expressed by such phenomena — is the basis for defining autism as an empathy disorder.

Please note the double standard at work.

Making a processing disability an empathy disability

When it comes to reading nonverbals, some sighted autistic people report not being able to see the signals at all. Others, like myself, receive a great deal of information from the eyes and face, but cannot parse the signals separately or intuitively. Perhaps we are really talking about the same thing here; after all, if I can’t separate the signals, the net effect is that I can’t see them as signals in the normal sense of the word. In any case, in my own experience, the problem is that all of the information from the eyes and face comes in very quickly. And while I cannot translate any of the more subtle nonverbals and use them in real time, my affective empathic response is quite acute. So, while I always understand that something is up, I may not always be able to discern exactly what it is at that very moment.

My visual processing of nonverbal signals is exactly analogous to my auditory processing of verbal speech: if you put me in a sound-rich environment, in which multiple conversations are going on at once, I can physically hear the sounds and the vocal tones, but I cannot separate the words from one another in order to understand and respond to them. The message becomes garbled.

No one has ever suggested that, because of my difficulties with auditory processing, being unable to understand what someone says to me verbally in a noisy room is evidence of low empathy. But when, because of my difficulties with visual processing, I can’t understand what someone says to me nonverbally, it’s adduced as prima facie evidence of a condition defined by low empathy.

That is a most illogical and unscientific conclusion.

If I cannot see nonverbal signals or parse them in real time, that is the sign of a visual processing issue, not the sign of an empathy disorder.

If I have to devote nearly every ounce of processing energy I have to decoding the words someone says to me, and therefore cannot afford to divert it for receiving visual information from the person’s eyes and face, that is the sign of an auditory processing issue, not the sign of an empathy disorder.

If, when I go to the market, I cannot stop and ask after people’s welfare because I have to focus on getting my shopping done before the sensory overload becomes disorienting and painful, that is the sign of a sensory processing issue, not the sign of an empathy disorder.

And if, when bombarded by sensory and emotional information, I find myself unable to express my empathy in real time and respond in any kind of conventional way, that is the sign of an information processing and communication issue, not the sign of an empathy disorder.

To define any of these issues as the signs of an empathy disorder is to take a physical disability and raise it to the level of a failure of humanity.

Hurt feelings, oversimplifications, and The Science of Evil

Suffering is nearly always the consequence of ascribing an inborn dearth of humanity to any child born to two human parents. And this is why any assertion that autistic people are born with a deficit in a core component of humanity is so terribly, terribly troubling to me.

I’m not talking about someone hurting my feelings, as Simon implies. What I’m concerned about are ill-conceived definitions and unwarranted conclusions that have the potential to cause tremendous suffering for autistic people at the hands of the larger world.

So, when Simon takes processing and communication difficulties and makes them evidence of an empathy disorder, then I have a problem.

And when, in a post for the Autism Blogs Directory, his words do not reflect the manner in which he describes our capacity for affective empathy in his latest book, my concerns only increase.

Consider the following: In his September 10th post, he provides a chart to explain the way that he profiles autistics and psychopaths in his recently published popular science book The Science of Evil (entitled Zero Degrees of Empathy in the UK). The chart in his blog post shows psychopaths and autistics with profiles that are a mirror-image of each other: psychopaths are positive for cognitive empathy but negative for affective empathy (they can intuitively read how people are feeling, but they don’t care), while autistics are negative for cognitive empathy and positive for affective empathy (we can’t intuitively read how people are feeling, but once we understand that a person is upset, we’re upset, too).

However, the information on this chart does not accurately represent the autistic profile that Simon delineates in The Science of Evil. For example, in a matrix in the latter part of the book, one finds that the profiles of psychopaths and autistics are not mirror images of each other; psychopaths show the same profile as in the blog post, but the autistic profile is negative for both cognitive and affective empathy(Table 1: Distinct Profiles of the Empathy Disorders, 154).

In fact, in contrast to his statement in his post that “people with autism are very capable of an empathic response,” The Science of Evil is relentless in its portrayal of the autistic capacity for affective empathy as highly impaired. In order to illustrate the nature of Asperger’s Syndrome, for example, Simon introduces a 52-year-old adult named Michael, whose dream “is to live in a world without people, where he can have total control.” Michael not only fails to read nonverbal signals, but “does not know how to respond to someone else’s feelings,” even when they are explicit (99).

The book does not differentiate between Michael not knowing what to do and not having an affective response at all.

The book does not explore the possibility that Michael may have long since shut down his emotional responses because of severe empathic and sensory overload, fear, anxiety, shunning, loneliness, bullying, despair, and other life experiences common to autistic people.

The book does not explore the possibility that Michael dreams of being alone because he seeks to comfort himself, in the midst of acute difficulties to which the world is largely oblivious, with a fantasy of control.

The book does not explore the possibility that Michael systemizes to an extreme degree in order to exert control over an extreme intensity of empathic and sensory experience.

And the book does not provide the story of Michael as only one example of the complexity of response among autistic people. It presents Michael as representative. Nowhere does Simon narrate any scenario in which any autistic person shows anyaffective empathic response to the feelings of another person. In fact, he does the following:

1. He asserts, without qualification of any kind, that for people with Asperger’s and people with classic autism, “Other people’s behavior is beyond comprehension, and empathy is impossible,” placing us all on the zero end of the empathy scale (117).

2. He then attempts to redeem autistic people as “Zero-Positive” (rather than “Zero-Negative,” which is reserved for psychopaths) because our “empathy difficulties” are associated with “having a brain that processes information in ways that can lead to talent” (citing the work of the savants Daniel Tammett, Derek Paravicini, and Peter Myers), and because “Zero-Positive” individuals are responsible for innovations in technology, science, mathematics, and other “systemizing” fields (96, 106-107, 122). Of course, he thereby leaves out the vast majority of autistic people who have no savant gifts and no special talent for innovation in any field at all. Hundreds of thousands of us therefore lose the already dubiously redemptive “Positive” label.

3. He goes to great lengths to insist that people with Asperger’s develop a moral code not because we are informed by an empathic response to others, but only out of a drive to systemize. When others act unethically, he writes, people with Asperger’s leap to the defense of the injured party — not because we are moved by empathy for the other person, but because unethical behavior “violates the moral system” we have “constructed through brute logic alone” (emphasis mine) (123). In other words, we’re simply upset that the rules have been broken.

Of course, this explanation rather begs the question of why anyone without an empathic response to the difficulties of other people would construct a moral code in the first place.

4. He characterizes people with classic autism as viewing their parents as “nothing more than a vending machine” to serve their desires. He thereby places people with classic autism outside the field of both empathic and ethical response, calling them “Morality-Negative” (119, 154).

And then he asserts in a post on the Autism Blogs Directory, four months after the publication of his book, that people with autism are, in fact, “very capable of an empathic response” — an assertion that appears nowhere, explicitly or implicitly, in the pages of The Science of Evil, published on two continents, and reviewed by critics the world over.

When someone writes a popular science book that will be read by far more people than any post on any blog, and in that book fails to address the depth and complexity of autistic experience, then we have a number of potential problems on our hands.

This is not about anyone hurting my feelings. It’s about the perpetuation of stereotypes and oversimplifications that, in my opinion, have the potential for tremendous harm. Consider the possibilities:

Autistic people describe our empathic experiences in detail, only to be told that we have such low empathy that we are the last to know it.

Autistic people protest abuse and ill-treatment, only to be told that we can’t understand other people’s motives and intentions, much less respond to them appropriately.

Autistic people are treated without empathy because other people believe that we have none ourselves.

Autistic people face lives of substandard care, isolation, and abuse because we are considered to have been born without a core component of humanity.

Autistic people lose opportunities for love, for friendship, and for caregiving work because people believe that we are incapable of them.

Autistic people lose our sense of who we are because we have to endure a constant and unrelenting barrage of messages that tell us that we are something else.

No, this is not about hurt feelings. It’s about the lives of people with classic autism. It’s about the lives of people with Asperger’s. It’s about the lives of people all along the spectrum. And it’s about the vulnerability, the rights, and the potential suffering of hundreds of thousands of living, breathing, fully human beings.